I Have Been Buried Under Years of Dust

by Valerie Gilpeer

  As a mother, every part of me fought against applying the label autistic to Emily. Even later, when she was in elementary school and it was obvious she was on the spectrum, when a parent asked me if Emily was autistic, I said no. I didn’t want her to be pigeonholed. Though I soon became more willing to accept the diagnosis—really, I had no choice—I long remained unwilling to share the diagnosis with others. Keep in mind, this was a quarter of a century ago. Perceptions of what it means to be autistic have changed radically in that time. As an analogy to understand the stigma we were fighting, consider that back then, it was also discreditable to have seen a psychiatrist. Workers went out of their way to keep their employer from knowing about their mental health history, going so far as to pay cash rather than use their health insurance benefits lest they become tarred by that shameful brush. To be upfront about such challenges was to commit a kind of career suicide. The same was true for autism. No one talked about it or knew what to expect. A heap of shame came with the label—not shame for me, as the parent, but rather, indignity and dishonor for Emily. Her future would be truncated by the diagnosis; people would make limiting judgments about her, based not on facts or observations, but purely on the title that got hung around her neck. I didn’t want that life for her.

  She was capable of so much, even if I couldn’t prove it to others. Besides, until we knew for sure what was going on, until we had proof that she was not capable of leading a neurotypical life, I refused to allow other people’s categorizations of my daughter to limit her. I didn’t want her to be left out of the larger world, whatever her limitations might be. Somehow, I knew she could be in the world, would be part of the world. I wanted that for her with every fiber of my being.

  My determination was bred in the bone. I’ve always been stubborn. When I was a toddler, according to my mother, I said “I do it self” to almost every situation I faced. I wanted to be independent and self-supporting from the get-go. That characteristic really flourished in caring for Emily.

  Part of my determination stems from being the second child, and female to boot, in our Jewish family. I joke that my parents dropped me off at kindergarten and then picked me up at the end of high school, and that’s basically true. I was completely overshadowed by my older brother’s brilliance. He was the only boy and the eldest; everyone bowed down to him. I used to overhear my father talk to him in his study, making sure he did well in school, overseeing his young life. I was excluded from those kinds of talks; my parents had zero expectations of me.

  “What will happen with Valerie?” my mother asked my father one time, unaware that I could hear.

  “She’ll just marry well and that will be that.”

  This attitude infuriated me and fired me up to prove them wrong. I’d show them what I was capable of. I can’t say that my determination in life was anything but bred in the bone, but their attitudes toward me may have strengthened my resolve.

  WHEN TOM CAME home after the appointment, my heart broke at the sight of him. He could barely look me in the face and his shoulders were slumped.

  He shook his head. “Dr. Sigman agreed,” he said. “She’s autistic. I have a list of people we can contact to get help for her. Behaviorists, speech therapists. I just . . .” His voice cracked. “It’s so hard.”

  For all his devastation at the diagnosis, Tom had been impressed by the doctor and trusted her. “She told me about what we could expect. None of it was positive.” Still, unlike me, he didn’t and wouldn’t give in to horrible fear or anxiety. “This is the situation we’re dealing with. What can we do immediately to make it better?”

  AT THANKSGIVING A week or so later we told only the people closest to us, including Tom’s mother, brother, and sister. Earlier, when I’d told my mother, she’d refused to believe it. There were no offers from any of the family members to assist us in any way—and there never would be. They were certainly all very sorry to hear this news, but that was about it. It was the start of a very lonely battle.

  Even worse, some in the family actually blamed me and Tom, claiming our “parenting style” (whatever that was supposed to mean) was the cause of the disability. That hurt deeply. We were all alone.

  DR. SIGMAN HAD told Tom about a young woman doing significant work with autistic children. “See if you can get in to see her,” the doctor had suggested.

  Doreen Granpeesheh is now known for the Center for Autism and Related Disorders (CARD), the organization she founded in the early nineties to provide behavioral intervention to individuals with autism and related disorders. She is now well recognized as a leader in the field, having been trained as a psychologist and behavior analyst at UCLA. She had been a protégé of Ivar Lovaas, a professor at UCLA famous for his early intervention techniques for children with autism.

  Lovaas developed a methodology called discrete trial training (DTT) as an intervention technique. It is a structured, instructional procedure, much like tutoring, that breaks down tasks into simple subunits to shape skills. The technique uses prompts, modeling, and positive reinforcement to facilitate learning. Doreen had served as Lovaas’s senior clinical supervisor and had worked with the families involved in his groundbreaking 1987 study documenting the progress of nine out of nineteen children who, through the use of intensive behavioral intervention including DTT, had acquired sufficient academic and language skills to be placed in a regular classroom.

  We spoke to Doreen and learned that unlike Lovaas, she did not use aversives in her protocol, but had developed an adapted version of DTT and was also employing applied behavior analysis (ABA) to change and modify the more interfering behaviors demonstrated by her clients. In no time, we had a plan in place. Emily, just two years old, would participate in twenty hours a week of one-on-one discrete trials and other services with the behavioral providers in our home, under Doreen’s supervision, as well as weekly family appointments with the entire “team”—Doreen, the behaviorists, and us.

  “EMILY, THIS IS Tricia. She is a friend of Mommy’s.” I introduced the first behaviorist who came to our door, a ballerina who supported herself working for CARD. All the women who came to work with Emily were young, mostly in their twenties. As best as I can recall, all had undergraduate degrees, and some were pursuing advanced degrees in psychology. Back then, I do not believe special training and certification to provide home-based services were mandated; I don’t know if they had any formal training beyond whatever Doreen had taught them.

  We made space for Tricia and the rotating group of behaviorists in the spare bedroom upstairs. They’d take Emily in that room and shut the door. We were welcome to come watch, of course, but didn’t want to be a distraction. Plus, it was simply too painful to observe.

  Five to six hours a day, four days a week, Tricia or a behaviorist sat with Emily, asking her to do specific tasks. Look at me. Hand me the toy. Touch your nose. Over and over and over again, the same commands, the nonstop orders to perform. Tricia and her ilk meticulously documented Emily’s progress on these seemingly benign tasks that were part of DTT.

  The young women all spoke in childish voices, full of energy and exaggeration. “Good job!” they said again and again in such a high-pitched tone that it made me want to cover my own ears. It must have been so frightening and intense for Emily. Their tone of voice and hyperbolic praise were insulting, at least to me, as if they didn’t understand how bright my little girl really was.

  Over and over, they noted how many times they made a request before Emily did what was asked. They offered her miniature M&M’s or tiny pieces of cookie as rewards. Goals were set each week for reducing the number of requests needed to elicit the specified action. The food was meant as a reinforcer, not a reward, but that distinction for a two-year-old wasn’t really clear.

  I pleaded with them to stop the rewards, particularly the food. Verbal praise was okay, but the fact that she could accomplish what they wanted should be a reward in and of itself. I was ignored.

  With the invasion of thi
s army of behaviorists, our lives were reordered. It was the beginning of the regimentation of our way of life, an endless race from therapist to therapist, as our days were filled with attending to Emily’s needs, as defined by her disability. I was convinced that, if we gave 100 percent to these recommended therapies, by the time Emily entered kindergarten, this autism puzzle would be solved. Again, magical thinking.

  Based on what we’d been told by the experts, this behavioral intervention was our best shot at giving Emily a semblance of a normal life. In some ways, it felt like electroshock therapy, as dramatic and even as violent, the way it shook up our days, like an earthquake displacing everything we knew, how we interacted, the very foundation of our lives. Still, we had to get Emily to return to us, to interrupt the way she was withdrawing from the world. We had to act soon to get her back before she disappeared entirely.

  Emily hated every moment of the therapy. She didn’t want to do what was being asked. She cried when the behaviorists arrived at our front door and in no time, her screams and shrieking filled our home, sending me and Tom into hiding, trying to blot out her wailing and bawling. She fought back and resisted, wanting nothing to do with the therapy. The behaviorists, meanwhile, just noted the data: what percentage of requests were met with success, how many times she had to be asked to touch her nose before she actually did so. And so on, ad nauseum.

  “HOW CAN EMILY be benefiting if she’s screaming all the time?” my mother asked during one of her visits.

  We refused to acknowledge that truth, as the alternative was to do nothing and that was simply not an option.

  “This is what we were told we have to do,” we responded. “By the experts.” It was the only answer we had.

  We hunkered down as if in crisis mode, willing to do anything necessary, even subject our child to activities that clearly made her miserable, hoping it would bring her back to us.

  Weekly, we met with Doreen in Encino to review the progress. We hated the constant collecting of data on Emily. The clinical ways the behaviorists worked with her made me feel as if Emily weren’t a beautiful child, our precious daughter, but a horse to be broken.

  AFTER MONTHS OF therapy, Emily followed simple commands. She still screamed regularly, but the behaviors began to shift. She listened to us a little more intently, making eye contact occasionally, even following a bit of what we said. Even the toe-walking disappeared at some point.

  Slowly, Emily gained the ability to execute certain tasks. The progress was laudable, and I prayed it would put her back on the road to a more normal life. There was hope.

  We changed everything about our lives to accommodate Emily’s therapies. One of us always had to be present when services were delivered in our home, so Tom moved his law practice from Beverly Hills into the house to be with Emily as often as possible. I moved my practice from Century City to nearby Tarzana so we could each take turns with her. If I had a day in court, Tom stayed home to be with Emily. If it was his turn to be in court, I stayed home. The cost of the behavior intervention, meanwhile, was staggering. To finance the behavioral therapy, we decided to sell the investment property I’d bought years earlier when I was single.

  “I bought it as a hedge against a rainy day,” I told Tom. “This is our rainy day. If we don’t get our arms around this situation, she won’t have a future.”

  What frustrated me the most was to learn that my ways of doing things would be expected to change. They wanted me to sit like this, be more quiet, look this way when someone speaks. Having that control was just not available to me at that young of an age. I have always liked to please people and I truly put forth effort.

  I sometimes wonder why behavior therapy doesn’t have more broken-down categories to accommodate the differences of people, and why it lacks the understanding that people like me have a disconnect between what’s being asked and what I was capable of doing.

  I hate saying it, but so many things they asked, I could not do—not because I didn’t understand or not want to learn. There was a lot of information coming in yet it was as if my body just couldn’t make sense of the information and process it to then do what was asked.

  I did a lot of screaming at that time. I yelled. Screaming is something I have worked very hard on to get to where I am now, where I have some control over it. Before, I had no tools, and once the frustration and confusion piled on, I became overloaded and I would scream. I couldn’t stop myself once I got going.

  Also, having the behaviorists come into my home always made me weary. I wasn’t able to get away. That feeling of frustration and dislike of my space being invaded lingered over me when anyone was here.

  For me, autism put an interesting layer into the idea of motivation, especially considering that reward or compensation of some form is a common tool used in behavior modification. The tiny piece of candy offered as a reward for raising my left hand may have left a bitter appeal in my mind to the idea of extrinsic motivation. It really just boils down to this: behavior modification wasn’t a particularly effective motive for me.

  As a student now, a very different one, there is some understanding. I wouldn’t be able to sit in a college classroom today without some of those things they were so adamant on teaching me, but I believe that it boils down to the lack of motivation when I was younger. I had nothing at the time that made it worth all the rules.

  5

  A handful of children and their parents were already in the play yard when we arrived at the Magic Years Nursery School, the most sought-after preschool in our community. It was Emily’s preschool admissions interview; she was three. I wanted her to attend a typical preschool like all the other children we knew; I wanted as typical a life for her as possible.

  Everyone in our Encino neighborhood raved about this school. I’d even heard of neighbors who’d enrolled their children while still in utero. It was that kind of place, supercompetitive.

  “You better get her on the list right away because it’s going to be really hard to get her in there,” one friend said.

  When we arrived for the group interview, the head of the school greeted us. I hadn’t told her about Emily’s diagnosis and I didn’t now. I wanted her to see Emily for who she was, not based on a label applied to her. I was nervous.

  I observed how the woman watched each child in the group, making mental notes, deciding who would get the golden ticket providing entrance to this world of privilege, and who would be left out. All the parents appeared anxious, hoping their kids would sufficiently impress this woman.

  As the parents fretted, kids dug at the sand table with shovels and buckets while others splashed at the water table and pushed toy boats. Still others played house or dress-up with the toys provided. Thankfully, there was also a swing set. Emily always loved swinging.*

  If Emily’s ability to swing could get her into the school, she’d be home free.

  “I need to see her interact with the other children,” the woman said. “I’d like to see her capacity for imaginative play.”

  “Emmy, honey, how about if you go and play with the other kids?”

  Reluctantly, she left the swing, but rather than join the other children, she stood there, unsure of what to do. Kids ran about her, pretended to be wild animals and spacemen, splashed water and shrieked with joy. Anyone can look at a playground and see how the kids engage with each other. If one of the children isn’t engaging, she stands out.

  Emily stood out.

  The director of the school declined to accept her into the program. In turning Emily down, though, she gave me deep insight into my daughter.

  “Emily doesn’t know what’s expected of her,” the woman told me.

  Over the years, I’ve come to see the great wisdom of that statement. This perspective frames everything about Emily, even now. She doesn’t do what people expect of her; she doesn’t meet the rubric. This is an important part of her autism. She’s marching to a different drummer. There’s a lot of good in that. Sometimes she does
differently, often something to be celebrated, though it’s not often what’s expected.

  She needed a road map, to be told: “Emily, come here. Let me show you what to do.” I think that would have been a better test of her competency for preschool, because once she’s shown what to do, she’s a champ.

  AFTER THE MAGIC Years, Tom and I sought out other preschools. The interview process was similar at all schools and categorically humiliating.

  “Will you take our beautiful daughter into your school? We’ll pay the outrageous tuition you charge. We’ll pay for a full-time aide to help her. We’ll donate. We’ll do whatever you say.”

  The answers were universally disheartening.

  “We’re not the place for you.”

  “We’re not well equipped to meet your daughter’s needs.”

  “We believe she’d be better served elsewhere.”

  The excuse of not being well equipped always irritated me. You don’t need to be well equipped, only willing. No preschools were, until we found a low-key Montessori school in Tarzana run by two women. The families there were more cooperative than competitive. It was a good fit. With the assistance of a one-on-one aide, Alison Appleby, a UCLA student who would go on to become a well-respected educational therapist, the experience was a success. With the support provided to her, Emily was able to navigate and participate in the preschool experience, and was not isolated from her peers.

  A FRIEND OF mine from college, Kathy Anderson, came to visit us from Bishop where she worked as an English teacher. Together, the three of us went to Genesta Park in Encino. Kathy took Emily on her own and I watched as they interacted with each other. Something was different. Kathy spoke to Emily as if she were an equal. Emily paid rapt attention to every word Kathy spoke. She was engaged in a way I hadn’t seen before. The light went on in my head. We needed to keep her engaged, to surround her with smart people who would challenge her and ask her to come up to their level. From that day forth, we only hired caregivers who were well educated and would model this behavior with Emily.