I Have Been Buried Under Years of Dust

by Valerie Gilpeer

  Amid those concerns, there were little glimpses of hope. Tom was at the mailbox one day when Emily was leaving with the nanny for an outing. “I go play,” she said to him. A full sentence. Of her own initiation. We were thrilled. Again, we applauded what we saw as her autonomy, her progress, the meeting of a developmental milestone. She hadn’t engaged with the tentative stumbling that most other children do when they learn to speak. She hadn’t offered a sentence composed of half-formed words. She articulated one complete, declarative sentence. Surely this was the beginning of her late-bloomer approach to language. We waited.

  AFTER THE DADDY and Me episode, Tom was troubled. He began researching, which led him to the Diagnostic and Statistical Manual of Mental Disorders (DSM)* in his law office, one of his reference books for all of the work his firm did in the mental health field. He raised questions at dinner.

  “Don’t you notice how she’s not making eye contact?” he asked.

  “She’s just easily distracted.”

  “I know. Maybe it’s something else.”

  “What are you talking about?” I challenged him. “She’s fine.”

  “People say that lack of eye contact is a symptom of certain conditions.”

  “What conditions?” I was getting mad. “What are you suggesting?”

  “Well, some books talk about autism.” Tom knew the word was toxic.

  “Isn’t that a bit of a reach?”

  “What about the toe-walking? A lot of experts say that’s a pretty clear indicator.”

  I was in denial of it all, but one thing I couldn’t deny was the fact that Emily had started walking on her toes shortly after she started walking. The professionals speculated—almost all of the endless parade that would soon become part of our life—that autistic children may prefer to walk on their tiptoes because doing so provides sensory stimulation not present when one walks on the entire foot. At the time, toe-walking was widely recognized as a sure sign of autism.

  “She doesn’t do it all the time,” I countered. “It’s only occasionally.”

  “And the screaming?”

  “She was always a colicky baby. When we lived on Mulholland Drive, remember how we had to walk back and forth with her at night so she could look at the lights of the city until she calmed? Maybe it’s just extended colic?”

  On some level, though, it was getting increasingly impossible to deny the signs. I didn’t want to see what was right in front of me.

  I tried to convince myself that Tom was leaping to conclusions. We had evidence she was brilliant. There was the car seat incident. And the first-birthday walking. These phrases became mantras I repeated to myself to forestall the other data: She wasn’t babbling like a lot of other children her age. Not saying “mama” or “dada.” Nor was she pointing, which is a well-known preverbal act.

  Tom, meanwhile, spent time in the Beverly Hills library near his office, checking out books and reading up on autism. “In the back of my mind, I knew what it was,” Tom told me later. “I was very upset, but I didn’t want to show it. I thought, All right, we have this coming. I know what’s happening. We’ll just have to deal with it. I will give a thousand percent.”

  Still, I was convinced Emily was bright and exceptional. I held on to that regardless of what Tom thought.

  When Emily was about fourteen months, as if to speak aloud my desires for her, I told Tom, “I can’t wait to hear Emily talk. I know she has so much to say.” Her words would come any day now. We’d been thinking about having a second child, and I’d decided that the timing would be right when Emily started talking. I kept waiting.

  WE ATTENDED A birthday party for one of the children in our Mommy and Me group when Emily was about sixteen months. The family had constructed a small maze made of plastic blocks in their yard. It was a pretty simple exercise and all the parents were cheering and clapping for the kids as they entered and plotted their way through the maze. We tried to lure Emily into participating, but she wouldn’t get anywhere near the maze. Either she knew she couldn’t do it, or she was in some way afraid of it. Whatever the reason, her refusal scared me. She was not complying with the norms of childhood and I didn’t like it.

  Was it possible Tom was right? The woman who ran the Mommy and Me class was a psychologist. She would know about developmental delays and other childhood issues. Privately, away from the other parents, I asked her, “Emily is fine, isn’t she? Developmentally, I mean.”

  “Oh, you have nothing to worry about,” she reassured me. “She is so independent. She’ll be the president of the United States one day.” Yes, she was independent. She did not cuddle with me the way the other kids did. I wasn’t sure if independence at sixteen months was a good thing.

  I tried to believe the expert, but day by day, my instincts aligned with what Tom had been saying. Something was wrong.

  THE TURNING POINT came on a trip to Florida to attend a bar mitzvah for Tom’s nephew. Emily was eighteen months old and I was sure at any moment we were about to hear her utter her first full sentences.

  The trip started off fine. On the way to the hotel, in fact, we passed a Burger King. From the back seat of the car we heard Emily say the letter “B” a few times in succession. She’d seen the “B” in the neon sign. Not only was she saying the letter, but she was demonstrating letter recognition, an indication she’d be reading and speaking before we knew it.

  We attended the reception following the ceremony and Emily was adorable in a flowered dress, complete with little Mary Jane shoes and tights. When the band started playing nineties pop music in the ballroom, Emily toddled to the center of the empty dance floor and started to wiggle her little butt, her diaper peeking out from under her dress. The entire party of a hundred and fifty guests stopped to watch her moves. Of course nothing is wrong, I admonished myself. Look, she’s got such a dynamic personality, she can keep a hundred and fifty people enthralled.

  That night, we left her with a teenage friend of the family in our hotel room while Tom and I returned to the celebration. Once we left the room, though, Emily became very agitated. The babysitter didn’t know what to do and decided to tough it out. By the time we returned a few hours later, Emily’s face was swollen from crying, snot all over her cheeks, her eyes red and her voice raw. She’d been standing in her crib the whole time we’d been gone, just screaming.

  “I couldn’t get her to stop,” the babysitter said.

  I know it sounds crazy or superstitious, but looking back, she was not the same after that. Before that night, she’d been able to understand things that were spoken to her, to raise her hands to have her dress changed, to come when called. Occasionally, she’d even said a word or two. We’d seen her engage in imaginative play, and though she didn’t care much about toys, ones that had become familiar to her she’d occasionally play with or hold.

  For whatever reason, from that night on, the progress toward language that Emily had been making—saying “I go play” that one time, recognizing and pronouncing the letter “B” from the fast-food sign—simply evaporated. We were moving backward.

  3

  I kept wondering, as she pulled further away from us and inside herself, where did the person I knew from birth to eighteen months of age go? She was in there and that person was impressive, but where was she now? The thought haunted me for all the coming years when she didn’t make the progress I’d hoped for; when she became more remote and ever harder to reach. I couldn’t let go of the child I knew. The preco-ciousness, the liveliness, the initial engagement. I couldn’t accept—never did accept—that the person who started off in my body and whom I’d seen smile with the impact of a thousand-watt bulb, was no longer there but hidden now in some impenetrable shell.

  FOR EMILY’S SECOND birthday I planned a party. I decorated the house and ordered a special cake. A clown with a crazy wig and costume came to entertain the kids, mostly children of family friends. They all lined up to have their faces painted and ran around the yard, playing gam
es with each other. Not Emily. Rather than engage with the other children, she played on the swings by herself, content in her own company.

  “Go play with the others,” I encouraged. She wouldn’t.

  She barely tolerated us singing “Happy Birthday” and blowing out the candles. As the party unfolded, she decided she’d had enough. She left the festivities and marched through the family room and to her bedroom to be alone, leaving us all in the backyard.

  I felt like my legs had been cut out from underneath me. I watched her go, my heart in my throat. I noted her complete lack of interest in the social activities of the day, no interest in the birthday presents or the children or the games.

  We have a picture from that day of Tom holding her, this beautiful child in a burgundy flowered dress with a crocheted collar. Her eyes are vacant and sad. Deeply sad. To this day, neither Tom nor I can bear looking at that photo. It was as if she’d lost her light.

  A FEW DAYS later we took Emily to her pediatrician for her annual checkup. After the examination, we expressed our suspicions with the kindly, older doctor, listing the warning signs we’d documented.

  The doctor nodded. “My colleague across the hall is a specialist in developmental-behavioral pediatrics at Children’s Hospital Los Angeles. Let me call over there. Maybe she can work you in today. She only comes into this satellite office once a week.”

  The specialist was able to see us right away. We met her in an examination room that was small and windowless, painted a pale bluish-gray, with two chairs for the parents and a child-size plastic table with a chair. The only relief from the sterile blandness was a collection of generic toys intended, I suppose, for the examining doctor to use to engage the child.

  The specialist, who appeared to be in her forties, entered the room. She didn’t talk to Emily, didn’t use any of those toys, just clinically evaluated her for a brief moment. I couldn’t understand how she could make a credible diagnosis without any effort to engage our daughter. Now, twenty-five years later with the wisdom of hindsight, I understand how recognizable the disability is.

  She turned her attention fully to us. “What’s your worst fear?”

  “Autism.” I said the word aloud, the word we’d once whispered in bed to each other, that we’d researched and parsed and tried to dismiss. The word that kept showing up again and again, no matter how many rationalizations I came up with; the word that cast a dark cloud over our lives. I hated that damn word. And now, I’d said it aloud to an expert in the field. I waited for her to dismiss the naivete of a new parent.

  “Well, you’re right to be worried.”

  I held my breath.

  The doctor explained that, in her opinion, Emily had pervasive developmental disorder (PDD).

  She didn’t say autism! My shoulders dropped about four inches. I looked at Tom, raising my eyebrow. All those concerns were for naught! I took his hand. Emily was okay.

  The doctor must have seen the relief on my face because she quickly shook her head, clarifying what she meant. “This is the diagnosis given to children before they’re school-age.”

  “I don’t understand.”

  “Sometimes children are slow developers and have not yet emerged with all the characteristics required for an official autism diagnosis, so the preferred practice is to give it time.”

  “You mean . . . ?” Tom asked.

  “As she ages, I’m pretty certain she will be recategorized as autistic. In either event, whether autism or PDD, the interventions and therapies are the same.”

  “You’re telling me that she basically has autism but it’s too early to call it that?” I asked. That brief moment of hope made this diagnosis all the more devastating.

  “Yes,” the doctor said. “Your child is autistic.”

  The doctor sat there, completely without emotion. Her words fell on us like sledgehammers. How I wish we’d been with someone with a better bedside manner, who could have understood our suffering in that moment, who could have delivered the news with a little empathy or kindness. I felt unmoored. Our daughter just stared at us, oblivious to what was unfolding. Young children are generally aware of their surroundings and would certainly note the distress of their parents, and Emily typically did. At that moment, though, Emily was unconcerned. I didn’t want to get hysterical with her in the room, but panic was growing inside me. I started to cry. Tom put his arm around me.

  As if reading off a checklist, the doctor recited places we could go next for intervention. She was so damn officious.

  This couldn’t be happening. The little voice of denial in my head kept rallying. I wanted to show this doctor that she was wrong. Watch us, I wanted to say, we’ll do whatever it takes. We’ll find the top specialists, explore all the treatments, and then she’ll be fine. By the time she starts school we’ll have the autism under control. We are smart people. We have the means. We’ll hire experts. We won’t stop until we’ve straightened this out. Whatever it takes, we’ll do it. Watch us!

  I crumbled a little bit as we left the office, the sun stinging my eyes. On the five-minute drive home, I kept looking back at the car seat to see Emily, her huge eyes taking it all in. Our beautiful child. I had no idea of the journey we were about to set out on, the implications of the diagnosis and where it would all lead. Still, I was ready to fight for her with all I had.

  DESPITE THE CONCLUSION reached by that specialist, we were unwilling to wholeheartedly accept the diagnosis. We’d both been schooled in the idea that you always need a second opinion; until we had a hard-and-fast, undeniable determination established by at least two medical professionals, I was not ready to acknowledge this reality and fully take it in.

  Tom, meanwhile, continued his research as more symptoms emerged. Emily demonstrated no back-and-forth communication via smiles and facial expressions, no babbling, no pointing to objects to ask for them. Tom tried to work on getting her to play with toys—to get her to even just touch one could be a challenge. Once he tried with a red toy truck, a little matchbox truck from a set her grandmother had sent. He showed her how it worked and how, if you pulled it along the ground, its wheels would spin. When he tried to get her to touch it, she screamed and jerked away from him and the car as if he were burning her. She was terrified of it.

  Still, we held on to our hopes that Emily was, as my mother suggested, just a “late talker.” After all, Emily was so animated, always smiling at people: she must be okay. Emily continued walking on her toes, however.

  “Flat feet, Emily, flat feet,” we said.

  She did as instructed.

  Inevitably, though, the toe-walking returned.

  I have a mind that soaks up all that is around me. I have an interesting relationship with words and languages, regarding the ease with which I write. I can see a picture or hear a song and experience it many different ways each time. I hold information in a way that I can sometimes see it before me. My senses allow me to experience things on a greater level than most, I think. The same way, I experience great emotion, even if it takes time to process them.

  Things got frustrating, especially when autism stuff was occurring with me. I knew I wasn’t fully in control and I didn’t like that. I was aware I was different, of course. I overheard conversations—I can hear everything in this damn house. I remember my parents’ blank faces, I could see the disconnect they felt. There’s just so much unmapped emotion from that time.

  It’s a strange thing to have to realize that you are not like everyone else. It was sometimes frustrating knowing that I had my way of doing things that was not efficient or typical. With that being said, I would not change who I am now . . . much.

  4

  The video was of a girl with autism, trying to comb her hair. The child, about twelve, held the comb to the side of her head and looked at the camera with a blank face and empty eyes. She appeared to be fully catatonic as she pulled the comb down the side of her face, not catching a single strand of hair. She didn’t notice.

 
The video playing on the VCR shook me to my core. To this day, I still see images of that little girl in my mind. It was a mockery of a child grooming herself.

  “You’re telling me, this is what I can expect for my daughter?” I spoke to the screen before punching the button to turn the video off and tossing the remote onto the coffee table. I couldn’t accept this possibility. Wouldn’t accept it.

  MARIAN SIGMAN WAS the name that kept coming up in the days following our meeting with the doctor from Children’s Hospital. Dr. Sigman was a developmental and clinical psychologist who cofounded the UCLA Center for Autism Research and Treatment (CART). Her work focused on the biological and environmental factors that contribute to social and communicative deficits in autism. The fact that her office was nearby at UCLA was a boon, though, to be honest, I would have gone to Timbuktu.

  As Dr. Sigman was very much in demand, we were unable to get an appointment immediately so in the meantime, we read everything we could get our hands on to understand what was happening, what our options were, how best to advocate and understand what to do for Emily. We were certain that with our prompt intervention and strong will, we’d wrestle whatever the issue was to the ground, make it give up its secrets. By the time she was school-age, this would all be behind us.

  I asked Tom if he would take Emily to the appointment with Dr. Sigman without me. I was leaning on him, upset at the whole idea of Emily being autistic. The diagnosis had shaken me deeply and now I was downright terrified that the opinion might be confirmed. I didn’t want to hear it. If I refused to go and listen to what this new doctor had to say, I could keep it from being real. Magical thinking, I know, but I held on to whatever flimsy reed I could find. Rather than make space for such an unacceptable reality in my life, I buried myself in my work. While my job was challenging, everything in my field was based on rules and laws, things that made sense to me in ways that life increasingly didn’t. I wanted to control those elements I still could.