The Silent History: A Novel (3 page)

I went back to work, and it was like finally crawling ashore. My team had held down the Schick account in my absence, and within a few weeks we launched a huge online campaign for the new Quattro with Flex-Edge technology. I was then up to 750 mg of Ambitor a day, which was only slightly over the recommended daily dose. This was around the time that the article appeared in
Harper’s
, the one that was like, Ambitor is dangerous, Ambitor has these unknown side effects. Ron encouraged me to stop taking it—at first he was sort of sweet about it, but he eventually turned belligerent. He started blaming the Ambitor for Spencer’s behavior, which I thought was a little … I mean, no one was saying anything about birth defects. This was just classic Ron, making a problem out of everything. I was still hoping that eventually Spencer would just sort of emerge from the depths, so to speak. Like, one day I’d wake up to the sound of his babbling in the next room, and I’d go in and he’d look at me and smile and say “Mama” for the first time. But it never happened.

AUGUST BURNHAM

NEWTON, MA

2012

My name is Dr. August Burnham, and I direct the Center for Neurodevelopmental Services at McLean Hospital in Belmont, Massachusetts. I administered the M-CHAT screening for Calvin Andersen shortly after returning to Boston from the tour for my first book,
The Wide Empty Sea: Living with Childhood Disintegrative Disorder
. My publicist reminded me on more than one occasion that the tour was a success, but I couldn’t help feeling like it had been a lot of wasted time. A lot of sitting around in hotel rooms just to talk for a half hour in a chain bookstore in front of a dozen people who seemed to have wandered in accidentally. Radio interviews with hosts who hadn’t read the book. The awkward exchanges with parents of CDD kids.

When I got back to Boston I was completely drained. I hadn’t expected it to be so difficult to get back to work. I’d lost interest in almost everything. This of course had an impact on my domestic life. My partner, Bruce, and I had recently adopted a boy from Honduras, a special-needs kid with a cleft palate and some mild developmental delays—a beautiful boy named Hector, which was the perfect name for him. Little warrior prince. Hector had just undergone his first cleft palate surgery and he needed a lot of attention, and I was already—well, I’d missed the surgery because of the book tour, and I think Bruce expected me to come back and be twice as attentive and supportive. But I just couldn’t bring myself to the task.

All of this is to say that when I screened Calvin I was not in the greatest shape. Calvin wasn’t speaking at thirty months, and his parents had driven him to McLean from Hadley in Western Mass. Their pediatrician had diagnosed Calvin with an oral-motor delay that she thought could be corrected with speech-language therapy. They worked with a speech pathologist who told them that she’d never seen a case as pervasive as Calvin’s, where there was just no trace of speech development. They were determined to get a more satisfactory diagnosis. Apparently he’d developed normally as an infant, but at eighteen months, when typically the rudiments of language are apparent, Calvin had no words or signs. The thing that was most disturbing to his parents was that not only was he not talking, but Calvin didn’t seem to want to communicate with them or anyone else. He seemed to have no desire to express himself in any way.

They came to me thinking I’d be able to detect this thing. As if I were some sort of medicine man who could commune with the spirit that possessed their son. Any validation from the medical community would be an anchor for them. It would allow them to move forward in whatever direction the diagnosis pointed. But they were—it was like they were not going to leave there without a diagnosis. I was already burned-out, as I said, and their determination only put me in a worse mood. But I went ahead and led Calvin through some exercises for the M-CHAT. I asked him to go over to the padded mat in the center of the room. He didn’t respond to the command, but he looked at me when I asked him, which meant that he heard me and was acknowledging me. I pointed at the mat and asked him again, and he just fixated on my face. I pointed again and asked a third time, but his gaze didn’t waver. I found this very curious. Not at all like a kid with, say, autism. I went over and knelt on the mat and he followed me there. He seemed interested in what I was doing, right? Again, this is not the type of behavior you’d typically see with autism or similar conditions. I made a face at him, a sort of clownish smile, and I asked him to make the face too. But he did nothing. I made a raspberry and asked him to make one, and he gave no response. No sound, acknowledgment that he understood what I was asking, but still displaying a level of attentiveness that would be odd for any child. Something cold and analytical about it, almost as if he was examining me.

In the end he came up short on a few of the critical questions in the diagnostic. There was something going on, but I had to tell Calvin’s parents that I wasn’t entirely sure what it was. It clearly wasn’t childhood disintegrative disorder—which, frankly, I was sick of talking about anyway. But Calvin also didn’t show any of the classic ASD symptoms, aside from the language issues, which were profound. I was at a loss, to be honest, but I was intrigued by Calvin, and I asked to see him again and run some more tests. I felt a charge inside, like something I’d lost was returning to me. It was exactly the kind of focus I needed. Exactly the sort of uncharted space I’d always wanted to explore.

MONICA MELENDEZ

HOUSTON, TX

2014

The parents drove their kids in from as far away as Odessa to take part in the study. Others registered online, sending video clips and testimonials. One man flew in from Oakland once a month with his daughter, a beautiful girl named Flora, who clung to him during the tests, burying her head in the crook of his arm. I got to know all of the parents quite well. They were so consumed—to the point of obsession, really, which was understandable. By the end of the first year we had twenty-seven families in our study.

It all happened very quickly. I remember hearing Dr. Reyes describing the symptoms to a colleague at a dinner party at the provost’s house, and then a few months later we’d publicly identified the condition and had thirteen diagnosed cases at the center. It was almost as if the announcement of the thing caused all of these cases to emerge. But really, who knows how long it’s been around. We might never find out how many kids were just misdiagnosed over the years, living with this condition that no one understood. I heard there’s a team working out of Douglas Hospital in Montreal that’s searching through medical records to try to find the earliest cases—apparently there’s an account from the 1980s of a factory worker with permanent aphasia who led a relatively normal life in a small town near Ottawa. I’m willing to bet there are others, but the year we conducted the study definitely had the flavor of an epidemic. Maybe
epidemic
is too strong a word, but you get the picture. Cases started showing up across the country. It hadn’t really broken to the press in a big way at that point, but the mental health community was, I remember, starting to become obsessed.

How it started was, Dr. Reyes had noticed these clusters of otherwise normal kids who seemed to have a total language impairment. They weren’t on the autistic spectrum, they had normal motor development, and aside from the obvious developmental delays from the language impairment they seemed to hit all of the baseline cognitive markers for children of their age. She was interested in finding out whether there was a pattern to this oddball phenomenon. I was brought in, because at the time I was the only nurse practitioner in the Houston metro area who had experience with the Hoekman tracking device. The Hoekman is a STEM imaging helmet that can capture neural activity footage at six hundred frames per second, which allows you to get an incredibly detailed look at the whole human head in situ. You can watch a subject examine an object and see exactly what areas of the brain are processing that information. So we fitted the kids with Hoekmans and had them sit at a table in the exam room. We brought in one of their parents and had them sit across from the child. They would greet the child and ask whether it was day or night—you know, just an easy question, to see if the kids were processing the utterances as language or as pure sound. Then the parent would sing “Row, Row, Row Your Boat” and ask the child to sing along. Again, just to see what happened when the question was posed.

What we found was fascinating. The Hoekman showed us that there was a dramatic spike in neural activity in the areas of the temporal lobe where we process sounds and recognize faces, but almost no activity whatsoever in the perisylvian region, where speech is received and produced. Usually, even with a developmentally disabled kid, you’d see activity there. You’d see them trying to parse the language of the voice they heard. But the kids in our study showed no activity, even though the tissue was completely healthy. Even though there was nothing else about their brain that would cause this type of inactivity. It was almost like part of their brain had been unplugged from birth.

Once the condition had been identified, we began forming coalitions with other early-identifier doctors around the country. Avula in Richmond, Burnham in Belmont, Yu in New Haven, all sharing case studies. The data was exhaustive, but no matter how much analysis we did on the brain scans and the behavioral surveys, we couldn’t answer the real question, the one the parents were afraid to even ask: Why? Why them, why their kids, why this? And just behind that: What did I do wrong? They didn’t want to ask, which was a secret relief to us, because we had no clear idea.

Meanwhile, the parents formed coalitions of their own, support groups that met regularly outside of the study sessions. They weren’t going to wait around for us to provide the solutions. They invited me to one of their meetings and I went because I felt I owed it to them. It wasn’t at all what I expected. There were about thirty parents in the room—almost all of whom were taking part in our study—and they all took turns getting up in front of the group and projecting home video footage of their kids. Most of the footage was from before the diagnosis. Really normal stuff—toddlers on swings, kids running around the beach or sitting at the table mashing food with a plastic fork. If you didn’t know what was going on with these kids, you might not notice anything unusual. But we could all see the signs hiding in plain sight. The absence of even babbling, the staring, the frequent disengagement—all of it was as clear as day once you knew what you were looking for.

The parent showing the footage would narrate, you know, “This is Joanie—I thought she was just shy.” And the other parents would nod. That was it. That was the whole meeting. Later the women started a website where any parent could post this type of footage. When I went to the site, I was surprised to see hundreds more of these videos from parents all over the country. Hours and hours of footage, more than there were hours in a lifetime to watch it all—the only evidence they had of the days and months they’d spent with their kids before the diagnosis. The moments of joy and hope before the big change.

FRANCINE CHANG

OAKLAND, CA

2016

I suppose I shouldn’t have been surprised that I’d have a silent student in my class. I was a first-year, so I only got one of them. I had no idea what to expect. I had no plan. Maybe I’d work one-on-one with him, give him some take-home assignments, and hope for the best. First day of class, during circle time, Colin—that was his name—sat still, and, while he seemed nervous, he wasn’t wild or out of control. Really, I didn’t want to think about my job at all. I wanted it to be this thing that I left on my desk, like my stapler, when I went home for the day.

“Please call me Francine,” I told the children on the first day of school.

“Ms. Francine,” one of the little girls said without raising her hand. “Do you have a stain on your shirt?”

Yes, I did. I held my shirt up to my nose to identify the culprit. It was yogurt, breakfast. I licked it off. I don’t know which I disliked more: the little girl, for saying this out loud, or the other kids for trying to score points by telling her how rude she was. They all started arguing. You can’t believe how long kids can argue if you don’t intervene. I stamped my foot and said, “This is not the rodeo, you little barnacles.” And then I laughed at the ridiculousness of it. They looked at me like I was insane. A blond boy raised his hand and asked, “Is this how you’ll be like all year?”

“Apparently,” I said. “Now who would like to take a nap?”

Wouldn’t you think teaching kindergarten would be easy? Addition, subtraction, cutting stuff with safety scissors, story time, summers off. I didn’t think it through. I didn’t picture herding thirty-four six-year-olds, these little need-machines, kids already reading chapter books sitting next to ones who didn’t know what an
h
was. They were all missing teeth and had these chaotically spelled names: Jaylenne, Beauxregard. I couldn’t keep track of them. Are you the one who carries corn chips in your pocket and eats them in class? Are you the one whose dad asked me how long I’ve been in this country? You know that feeling you get when you’re singing along with a song, but you only know, like, six of the words? That was pretty much my entire year.

I’m not a leader. I don’t like being looked to or giving orders. I don’t want to be the head of anything. I never played princess. I wanted to be one of the princess’s maidens, who sat around while the princess did the work. But teachers can’t do that. You have to look authoritative, even when you have no idea what you’re talking about. Especially then.

I put Colin at a desk near mine. I actually rearranged the desks so that I sat at the back of the classroom and all the children faced the front. I spent a lot of time looking at the back of Colin’s head. We worked out a mutual agreement—he could do whatever he wanted as long as he stayed seated. I wouldn’t call on him or try to rescue him, and he could draw circles and rectangles on his graph paper and not make a sound. In the rowdy scrabbling of the morning classroom, there was Colin, silent, benignly silent. A perfect container for himself. He gave nothing, demanded nothing, and I adored him for that.