So, to recap: older father + reproductive technology + twins = trifecta of bad juju. These are three main risk factors for autism. I had them all.
But there was yet one other possibility:
Because I am a bitch. A few days ago Henry said to me, “I think you were born to be a mother.” Ha. Ha. A-hahahahahahahahaha.
After Henry and Gus were born by emergency C-section, I did not see them for twenty-four hours. Not because I wasn’t allowed to. I just didn’t feel like moving. I had already told the nursing staff at NYU I wasn’t going to breast-feed. Instead, I alternated between sleeping and pushing the button on the morphine drip like a lab rat. Friends and family saw my kids before I did.
In the months that followed, I shelled out money I couldn’t really afford to keep a baby nurse because I wanted to keep working and I knew that sleep deprivation meant no work. That was half the reason. The other half was that I was actually rather frightened of babies, and having two that were the size of roast chickens and looked a little like that baby in Eraserhead didn’t help their cause. John was also not a source of solace. In retrospect it’s understandable that a man his age who already had a grown son—a son older than his current wife—would not be that engaged by infants. He never changed a diaper, and was given to saying things like, “Children destroy your soul.” Eventually he turned out to be a more patient, nurturing person than I am. But at that point I spent most of my spare time either crying or looking at men on Match.com—many of whom, I told myself encouragingly, weren’t currently aware they wanted a forty-one-year-old woman with twins, but would know the moment they laid eyes on me.
Love for Henry and Gus came ineluctably but gradually. Those first six months were brutal.
No matter that the idea is debunked, as it has been for so many years, every mother of a child with autism occasionally flashes on the term “refrigerator mother,” popularized by famed psychologist Bruno Bettelheim. (Actually he was a lumber merchant who then studied philosophy at university in Austria. He then reinvented himself as a child psychologist after moving to the United States.)
Autism was first introduced to the popular culture in a Time magazine article published in 1948. Titled “Frosted Children,” it reported on the work of Leo Kanner, the psychiatrist who in 1943 had identified the condition of “early infantile autism.” Kanner always believed that autism was innate. But he also speculated, perhaps a little unwisely, that the parents of these “Diaper Age Schizoids,” as the article calls them, were unusually cold and did not really exist among the less well-educated classes. Kanner later came to believe that the parents themselves had traces of the autistic behavior that found full flower in their children—in other words, the parents had some autistic traits and passed them on.
But that’s not how Bettelheim, who directed the University of Chicago’s Sonia Shankman Orthogenic School for emotionally disturbed children, saw it. Bettelheim believed the parents’ coldness caused autism. The part of his argument that haunted me? This, from Bettelheim’s 1960s bestseller, The Empty Fortress: “The precipitating factor in infantile autism is the parent’s wish that his child did not exist. Infants, if totally deserted by humans before they have developed enough to shift for themselves, will die. And if their physical care is enough for survival but they are deserted emotionally, or are pushed beyond the capacity to cope, they will become autistic.”
Now, why would I spend years shooting myself up with fertility drugs and copulating on command if I didn’t want children? And yet in dark moments I wondered. Were all those miscarriages the mind guiding the body to do what I really wanted?
When I needed still more ways to blame myself, I would read about the genes involved in brain development, more specifically about the two hundred plus mutations that are found in children with ASD. Are some important? One? None? All? Then, I came across the studies on mice that show that if they contract certain viruses during pregnancy, their babies will develop autism-like symptoms. Did I have a bug that set off a chain reaction of brain damage? Who knows. I was too busy throwing up.
I still have days when I work myself into a frenzy about all the ways I could have caused Gus’s autism. But there is that theoretical awfulness, and then there is the precious small person. I look at Gus the person, not Gus the mental condition, and I calm the hell down.
Three
Again Again Again
Me: Have I mentioned that you’re handsome?
Gus: Yes.
Me: Have I mentioned that I love you?
Gus: Yes. And have I mentioned that you’re bad?
Me: MEH.
Gus: [chortles]
Gus: What’s the high point of your day?
Me: Putting you to bed.
Gus: And low points?
Me: No lows. And you?
Gus: The high point of my day is when you put me to bed. No lows.
Me: Now, I have just one question for you . . .
Gus: [Shining eyes. Wait . . . Wait for it . . . ]
Me: Are you my sweetheart?
Gus: YES! Yes, I am your sweetheart.
“Mom? Seriously? You’re still doing that?” Henry says, incredulous, when he overhears our nighttime catechism. At fourteen, Henry rarely leaves his room at night except to walk the eight feet to the refrigerator for snacks, which explains how I’ve been hiding it from him for a couple of years. OK, maybe ten. Henry thinks that logic is the answer to everything.
“First of all, it’s not true,” Henry begins. “He’s not that handsome, frankly, and if the high point of your day is putting him to bed, you need to get a life. Second, it doesn’t even make sense. When he says, ‘Did I mention that you’re bad?’ and you say ‘MEH,’ did it ever occur to you to challenge that assumption?”
“It makes him laugh,” I say, a little defensively.
“I know . . . but it made him laugh when we were five. WHY ARE YOU STILL DOING IT?”
Why indeed. Why do I let him eat the same food, wear the same pajamas, watch the same videos, give me the same weather report at dinner, and rescue his stuffed animals from the garbage when I try to throw them out? (“They like to sleep with me.”) These eccentricities are minor. But others are not, because they reveal an inability, or unwillingness, to learn from experience.
When I got a note from Gus’s school that they were concerned about his hygiene, I was mortified. With the amount of reminding and nagging I’ve devoted to making sure both my sons brush, shower, and wash their hands, it’s miraculous that I have not induced some form of OCD. I tell Gus, again and again, that if you are autistic it is particularly important that you practice “handsomeness” (as he calls it), so that even if you are different from other people, they are not going to be put off by you. I believe this, and I say it every day of his life. But there comes a certain point when a mother does not want to be washing her son’s hair for him, and he doesn’t want her to, either. The problem is that Gus cannot get the idea of washing out the shampoo. He cannot, will not, put his head completely into a shower stream and tilt his head back; he seems to think he will suck in water and suffocate. So if I don’t physically force him, the soap builds up and his hair looks like it belongs on Johnny Rotten. It’s not a big deal, and yet it’s a big deal. I come close to tears over the soap in his hair. Sure, I could solve the problem by giving him a buzz cut. But when I’ve done this in the past, his opera-singer father, whose ideas about men’s hair were unduly influenced by his many performances in Samson et Dalila, just looks too sad.
* * *
All kids enjoy, and need, a certain amount of routine in their lives. But most are also wired for variety. People with autism are wired for predictability. Sameness is Gus’s jam.
I have to be careful about the sounds I make around him because if he loves one he will demand I make it for the next infinity years. And usually the word has to be sung, not spoken. So he will only brush his teeth if I sing “Mint!” and only wash his hands if I say, in a querying manner, “Palms?” (F
or years teachers called him the Boy with No Hands because he couldn’t let anything touch his palms. Only fingertips ever saw water. Thus my insistence on washing palms.) And food? He has had the same plate of apples, bananas, and Cheerios every morning since he could eat solid food, and every night, the same rice pudding. (They have to be the same kind of apple, too. When we’d go apple picking in the fall, he would gather them happily but not want to try them, because he knew they were not Fujis.) Every Friday night without fail there are chicken fingers and fries from the local Greek diner. Mashed potato is the only potato, and he devours an avocado a day. No vegetables, no rice, no bread, no pasta. He likes exactly the same foods and greets them with the same relish, no matter how many times they are served.
Being such a cheerful fellow, he does not have a complete nervous breakdown like many young adults on the spectrum when his routines are broken. If we walk a slightly different route to school, he merely trembles but doesn’t throw himself on the ground. If a train stops unexpectedly in the tunnel, tears might stream silently down his face, but he won’t get angry. And if, say, a subway has been rerouted and the E train appears where the B train was supposed to be, I can always jolly him out of his panic by explaining that it was a “magic” train. Indeed, saying something or someone is “magic” often softens the blow. Which is why the substitute teacher at school—the unexpected person—is practically a sorcerer as far as Gus is concerned.
Still, the anxiety for the unknown is ever-present. No amount of reasoning has ever been able to make him stop crying when he sees on his beloved Weather.com that there might be a thunderstorm. “I know it won’t hurt me,” he says as he grabs his bedclothes and drags them into his closet, where he will spend the night. “I just don’t like the noise.”
And while that’s true, it’s not even that. It’s the uncertainty. I was very pleased with myself when I bought a lightning-tracking device that tells you when there will be a strike within a certain range. That sounded like such a good idea (“See, honey, you’ll always know!”) until I discovered that the range was something like twenty-five miles. This may be useful when you’re in the middle of a farm in Kansas, but when you’re in New York City a lightning strike twenty-five miles away means nothing, except that now your terrified child is constantly on the lookout for lightning and thunder he would never even notice, save for this stupid device you just bought.
I had to disappear the lightning detector, but not before there were several miserable nights cowering in the closet. Today statistics mean something to him, so he is cheerful when AccuWeather reports there is a 20 percent chance, or less, of thunder and lightning. Still, when Henry wants to get Gus running to the computer in fear, all he has to say is, “Hey, Gus, isn’t there a 75 percent chance of thunder tonight? Why don’t you look it up?”
* * *
“So what if he likes routine? I don’t understand why you get so upset,” John says as he and Gus finish up the same conversation about changes in the train schedule they have had every night since Gus could talk. Then John hears the too-loud music playing upstairs, shouts in the general direction of the neighbors despite the fact that they can’t hear him, and resumes eating dinner, one of the five or six acceptable entrées he’s been eating repeatedly for the past eighty-three years.
The love of sameness is what first drew me to my husband. After a lifetime of tumultuous relationships where, safe to say, fidelity didn’t play a great role, John offered sweetness and constancy. Because he is a person of such stolid habits, I figured he’d never get bored with me. I mean, so what if he likes the same completely bland overcooked food, cooked in the same way, every day of his life? It makes him happy. He seeks out the same kind of wide-lapel suits he wore in the 1950s, refuses to go to restaurants “because you never know what they sneak into the food,” never changes his opinion on something once his mind is made up, refuses to learn to use a computer, and scorns social media—“because why do you need the world knowing your business?”
He loves classical music and rereads the same great books every year. I admired his intellect, even as I wondered at his lack of curiosity about anything new. And sexually . . . did I mention that part about never getting bored? All I had to do was move to the left or kiss to the right and I was a wild woman. This assuaged my deepest insecurities. The fact that he didn’t want to live with me because there was too much chaos in my life suited me fine. If someone loved you but got upset when the pillows on the bed weren’t lined up properly or his special mug wasn’t in the section of the cabinet where he expected it to be, you, too, might think it unwise to live together.
So Gus’s love of routine didn’t seem so odd to me. At first.
I’m not sure when I noticed his love of repetition far exceeded anything other toddlers loved. Maybe it was the Mozart cube he carried around with him until he was seven, playing the same tunes, in the same order, over and over again. Maybe it was the fact that he, like his father, could not leave a room without straightening it out and closing all the drawers. (Some compulsions are useful.) We all understand the thrill of the familiar when it comes to certain things—music, most obviously, and poetry, and lines from favorite books. For me, it’s the first line of my favorite twentieth-century novel: “Lolita, light of my life, fire of my loins. My sin, my soul. Lo-lee-ta: the tip of the tongue taking a trip of three steps down the palate to tap, at three, on the teeth.” Seriously, that never gets old.
But how can the same be said of a video of wooden escalators at Macy’s? This video on YouTube lasts fifteen minutes. Some guy filmed himself going up every floor. The last time I looked, the video has 430,469 views. I’m sure that (1) every person who has watched it in its entirety is on the spectrum, and (2) 300,000 of those views belong to Gus.
Gus has a word for the unfamiliar, and that word is “no.” When I told him that I wanted to change the curtains and bedspread in his room, or maybe just take down the finger paints from second grade, he looked at me plaintively and said what he says about pretty much everything: “Mommy, I just like the old things best.”
Every parent or caretaker of an autistic person has his or her story of Same. My friend Michele remembers getting her brother to bring her twins to visit her in the hospital when she’d had her third baby. One of the twins is on the spectrum. Every day for three days, they took the subway. “My brother had to walk through the cars asking people to move because my son Jack would sit only on yellow subway seats, never on orange. People would point out an empty seat and my brother would be all, ‘No can do. Gotta be yellow.’ He didn’t even explain why. He was just like, ‘Nope, he needs the yellow seat.’”
In April 2016, an article in Spectrum, the online autism-research-news site, explains why up to 84 percent of children with autism have high levels of anxiety, and up to 70 percent have some sort of sensory sensitivity: they are lousy at predicting the future. They tend to miss the cues. But it’s not like they’re golden retrievers, living forever in the present. They know perfectly well that there is a future. So combine these two concepts—knowledge that the future is coming and being horrible at figuring out what it might be—and you can see how knowing your breakfast will always be apples, bananas, and Cheerios might be extremely soothing.
Repetition also makes us feel competent, a phenomenon not reserved for the autistic. My friend David Kleeman, one of the leading children’s media experts in the country, explained to me that repetition is purposely worked into children’s programming. “Nickelodeon would put the same episode of Blue’s Clues on five days in a row,” he told me. “Day one, it’s new to the kid. Day two, it’s familiar. Days three to five, the kid anticipates the interactivity and feels smart.” When Gus was little, he failed abysmally at those sequencing tests where you are showed a bunch of cards and asked to put them in an order that makes a logical story. He’s not much better at them now, because the ability to infer is damaged. So it must be an awfully good feeling for Gus to know what happens next, which is par
t of the reason that he still watches Sesame Street videos. He will speak all the lines or play different parts; he seems to have an affinity for Ernie. If you think this is alarming and frustrating to see in a teenager, you are correct, but everything is relative. He has finally lost his taste for Teletubbies. Or has gained enough guile to hide it from me. Either way . . . yay!
And then there is the possibility that what is excruciating sameness to me holds thrilling shades of difference for him. For many years Gus would stop everything he was doing to watch the ambulances going by our window, and would usually know which hospital the ambulance was coming from. I figured he just had good eyesight and could see quickly as they zoomed by. But then, I discovered he was myopic, but it didn’t matter—he knew in the dark. It turns out that the sirens have slightly different pitches—and since he watched ambulances on YouTube, he associated each pitch with the particular hospital and knew which ones were passing by. This is just one of my many boasts when I get together with other parents of autistic kids and we play our favorite game, “Why Isn’t This a Marketable Skill?” Oh, sure, other mothers can talk about their child’s grades and the number of parties they’re invited to, but can your child tell which person in a family slept on a particular pillow by the smell? Or can your little genius tell when food is going to go bad before anyone else? My friend Andrea’s son can remember everything that happened on a particular date—“but only for himself. It can be as large an event as a trip to an amusement park or as small as a trip to the store. He can go back years, and tell everything about the day in chronological order. If only this memory applied to academics.”
To Siri with Love Page 4
