Autism has long, graceful fingers, thin tapers always moving, lightly tapping the table, the dashboard, a knee, stacking and restacking themselves, braiding and unbraiding, calming my sister as she acts as her own metronome, keeping time to the march in her head that nobody else can hear. She cuts her nails short, ever shorter, sometimes to the point of drawing blood, because she can’t stand the way they feel when they grow past the smooth tips of her fingers. Clip clip clip. She uses the same nail clippers to trim the fraying ends of her shoelaces, which only makes them unravel further until she screams in frustration.
Autism is Margaret’s lovely hands twisted up in fury, clenched into fists, and pounding the walls, the floor, the windows, in a wordless, roaring rage that takes her away from us to a place she can’t see anyone or take comfort from those around her. Hands smashing glass, ripping the door off its hinges, punching a hole in the wall. Scabs and scars on her small wrists from biting, smashing, scratching.
Autism sounds like a pair of graceful, slender feet brushing back and forth against each other under the sheets in the dark, not sleeping. Wide awake in the middle of the night, autism is a peal of laughter inspired by some incommunicable joke. It sounds like a scolding whisper in the darkness as my sister rushes back up the stairs in her long flannel nightgown returning from her compulsive journey to the record cabinet to check for a particular record album cover once, twice, again. It is my sister’s voice, perfectly parroting our mother’s gentle scolding: “Now, you go to bed!” the same cadence every time. “Now, you go to bed.” One-two-three-and-four. “Now, you get in the car!” “Line up for gym!”
Autism tastes like blood in my three-year-old mouth when I bit Margaret’s arm to try to make her stop screaming, and then I blamed it on the dog. I’m a liar, a bad liar, and I hate myself. It tastes like the metallic rage in my nose and throat when I caught our neighbor taunting my sister, trying to make her eat dog shit. It’s the ice water coursing through my veins when I saw the two mean boys from down the street trying to make her take her clothes off in the front yard. I’m frozen. I’m furious. I’m helpless. I’m enraged.
Autism feels like everyone in church is staring, asking, Why can’t you make her stop laughing? What’s wrong with her anyway? What’s wrong with your family? What’s wrong with you?
Autism. It’s got more than three syllables. It’s got miles in it, years in it. It’s a road that cut through my sister’s life and, consequently, through mine. It drove over our family and changed everything we might have been. I was just weeks away from being born on the day that all the accumulated clinical testing and observation data was handed down as a verdict. Autism. But it was there before I was, so who really knows what my life would have been like without it? It’s like living in a river valley one hundred years after the big flood and trying to understand what life would have been like if its trajectory had taken the destructive waters a few miles farther north.
Autism has been with us for four decades now, and I don’t know what Margaret is like without it. I haven’t been able to imagine what she would be like if she weren’t burdened with a disorder that makes it so difficult for her to relate to other people. When I was a child I had a fantasy about her recovery. I’d wake up one day and look over to her side of the room from my matching twin bed. I dreamed she’d be sitting there, waiting for me to open my eyes, and she’d be normal, whatever that means. “Hi, Eileen!” she’d say. “I was just kidding around.” And then I’d be normal, too. I loved this fantasy. I tried really hard to believe that this could happen, lying there some Saturday mornings and peeking at her through my eyelashes. But I couldn’t ever conjure what things would be like after that moment.
I’ve never known Margaret without the distinguishing characteristics that come with her autism, but I’m struggling to understand her apart from it. While the disorder is inarguably the single most defining factor of my sister’s personality and her life so far, I’d like to be able to separate the two. I want to believe I can understand the difference. It’s difficult, because I met them both at the same time.
During our childhood, autism was never mentioned without some connection to my sister, and rarely was Margaret mentioned without reference to her autism. But now, as an adult, I can see her struggle around it, trying to reach the surface of the quagmire that keeps her from communicating clearly, from laughing at the right time, from explaining the complicated feelings behind her tears as she stands, facing me, crying in a mute and terrible sorrow.
Sometimes it seems possible to find a bridge between our worlds and to meet each other in the middle. When the car pulls up at the curb, my sister throws off her seat belt and jumps out of the passenger seat, crying, “Hello, Eileen!” Her face lights up with happiness and recognition. The sun catches her brown hair, turning it red. Here is my sister, she is saying to herself. I watch her cross the lawn, a joyful, bouncing rush that might turn into unease in a matter of minutes. But for now her face shines with happiness, the sun touches her brightly striped shirt as she rushes toward me. She’s all motion.
Here is my sister, I am saying to myself as I open my arms to embrace her. This is my sister Margaret. She has a disorder called autism.
I KEPT READING. I was still looking for the voices of other siblings, preferably older, more experienced ones. I wanted to hear from someone who had been through this before and had the answers to my questions: How did you deal with all this? I wanted to know, And what are you doing now? How do you relate to your sibling? Does she talk to you? Can you go and visit her? How do you try to build your own life knowing that hers will always be limited by her disability? What do you do with your guilt, your anger, your sorrow? What is your responsibility toward this person as an adult? What do you do when your parents die?
At the beginning of my inquiry, I’d read a parents’ guide written by medical experts and therapists. The book offered practical advice on diagnosis, treatment, and educational concerns, even legal advice. Obviously this book had not been written for me. Even so, I found myself getting pissed off when I read the four meager pages devoted to siblings’ concerns. Here we were, still an afterthought, and I felt not unlike my parents must have—alone and blazing the trail.
But then I began to notice a new trend in children’s books written for siblings of children with autism. At least this generation is getting that support, I thought. I joined a Listserv, which gave me hope, but after reading the posts for a while, I realized that most of the other users were teenagers. I became increasingly disturbed by the fact that they were all girls and seemed to be experts on autism. Knowing that boys are four times more likely to have autism, I wondered about how young girls get sucked into the caretaking mode so early in life. They wrote about how hard it was to cope with their siblings and the more standard, depressing realities of being a teenager, but they also spent much of their time offering one another advice on caregiving. They offered tips on how to change their sibling’s food or medication or routine. They suggested talking to their sibling’s pediatrician to help mitigate possible allergies. Many of them were consciously training for the day that their sibling would move in with them after their parents died. They were little adults already.
The way they wrote, you’d think they didn’t have a choice but to become the main support for their siblings after their parents died. Some didn’t. Some had no other family to depend on and no financial support. And they had never heard of any alternative. I hadn’t, either, until I’d started this particular search. In Siblings of Children with Autism, Drs. Sandra Harris and Beth Glasberg wrote that some siblings become full-time caregivers while others provide ancillary social support. Others cut ties altogether. “Whatever choice an adult sibling makes is a legitimate one,” they wrote.
But these Listserv girls were too young yet to make those choices. Some of them had harrowing stories about older, stronger siblings throwing them down the stairs, smashing their toys, tearing out hair, and breaking bones. And they were
young, so young. Of course we know the autistic brothers and sisters can’t always control their behavior. Yet, I had to wonder how this kind of physical violence was shaping them and had shaped me. What do you do when someone beats you up and your parents say, “He can’t help it. Don’t be angry.”?
I thought about how my parents had the means and the foresight to provide Margaret with a place of her own. I was grateful for that, and, having witnessed Margaret’s success in her home life, I was disturbed by the writings of some of these passionate teenagers who said they would never, ever let their brother move into one of those awful group homes, where he’d be so lonely and scared. I thought of where Margaret lived, her cheerful, loud house, her girlish bedroom. I remembered the blank look on her face as she sat rocking on the couch at my parents’ house the year after she graduated from school and didn’t have anywhere to go. My mother struggled to keep her occupied, to fill her hours, and no one was happy. I thought of how joyful Margaret had been when she had a job she liked, and how she now has the power to make us leave her space when we come over to visit. “G’bye!” she yells cheerfully, slamming the front door on our heels. “Thanks for coming!” she calls out from behind the closed door.
I still think about one of the few older Listserv members who wrote to me. She was in her late twenties and hadn’t gone to college, because she felt like she had to take care of her younger brothers, both with autism. Her parents couldn’t handle them, she said. She described herself as depressed and having no friends. She had spent all her time taking care of her brothers, so she’d never cultivated any hobbies or friendships. She hadn’t had the time for a job, since she was looking after the boys, and so she had no work experience outside the home. While it seemed possible that she could have earned some kind of living from this situation, she said her parents kept the money that the government paid each month for each boy’s disability. And at the time of her last posting, her parents had started charging her rent.
This woman was totally paralyzed. What could I say to someone like her? “You need to have your own life if you want to be a healthy caregiver for your brothers,” I wrote. “And if you want to take care of them, that is a choice you have to make. You have all kinds of choices.” “I can’t. I don’t,” she wrote back. “Nothing changes.” She stopped writing. Her story kept me awake at night. It made me think about how I used to believe I was supposed to take care of Margaret when we were older, an idea that made me feel like I couldn’t breathe. It was only now becoming clear to me that that scenario would be unlikely, and I was grateful for this, because I knew how unhappy it would make me, and I suspected that Margaret would not like it any better.
So, what, then, were my answers? What was my truth? I was not trapped like that woman was. But I was not untrapped. I had some kind of obligation to my sister, although I wasn’t quite sure what it was. Margaret had a home and family and people who cared for her. But it wasn’t perfect, either. It didn’t make a good newspaper story, like the kind of newspaper feature I seemed to read once a year about how some kid with autism was doing great in school, so great, in fact, that he was in the “regular” classroom and was even making friends with his “normal” peers. And how these normal kids were sensitive, compassionate children whose teachers said they were better kids for having quirky little so-and-so in their classroom.
I couldn’t read those stories anymore. They made me angry, because they usually focused on attractive, high-functioning children. Kids with autism who scream for hours and throw themselves down on the floor over and over don’t interview well. Neither do the ones who grind their teeth, spit on people, bite themselves, and wet their pants right after you take them to the bathroom, like the kids I worked with when I volunteered in Margaret’s classroom during high school. But these are the realities for so many autistic children—daily, difficult realities for them, for their parents, and for their siblings.
Here was another not-so-good story: the forty-year-old autistic woman who kept getting fired for pinching people and screaming at work. Or, on the flip side, a forty-year-old woman who couldn’t find a job, because there didn’t seem to be any companies that were big-hearted enough to hire someone who needed a lot of support at work so that she wouldn’t pinch people who talked too much or go to pieces when the paper shredder crapped out. This was my sister’s current hard reality.
In the grand scheme, I knew Margaret had a difficult life. But I also knew she had a good life. She had kind people taking care of her, and she had dedicated parents. She had a home of her own, and she had friends. She was a Special Olympian and a medal winner, too, by God. However, none of this would have been possible without years of effort from my family and her teachers, or without the daily attention and dedication of the staff members at her house. And none of it came without a cost. I knew that the sacrifices my family made—that every family makes—were incalculable.
I read more books about autism, and I wrote. I started to understand how early in my life Margaret’s autism had changed me. She and I were two of five kids, and even though the other three were closer to her in age, it was me who turned around to wait for her when the rest of them ran toward the playground. While our siblings sprinted for the swings, Margaret sat on the picnic blanket, staring down at what seemed like nothing, not wanting to go with us, not even seeming to notice that we were there. I stood there on the grass between her and the others, not knowing if I should go forward or back.
Now I had begun to untangle the threads of my own life from what I remembered of our dual one. I wanted to wind them onto a new loom in my attempt to make sense of who I was and how autism had shaped me. I also wanted to see Margaret’s life for what it was—separate, complete, whole. Autism was a red hammer, a blue hairbrush. It was rage and tears that somehow left room for joy. It was many things, but one thing was certain—autism was never going away, at least not from our lives.
At the end of that fall, I understood that the story didn’t have an ending yet. Autism was still taking my sister and me on a journey. It was those miles and years and mountains that we had traveled—Margaret because she didn’t have a choice, and me because I was choosing to try to know her. I began then to understand that I was choosing something in a way I’d never been able to as a child. I knew we both had a long way to go, but nobody gets out of here alive anyway. I didn’t know what I thought I had to offer her exactly, as a sibling. I was not the most patient person in the world, and not always as kind as I would like to be. I was no expert on autism or on what Margaret needed to feel more at ease in the world. But I was family.
I remembered a story my grandmother had told me. When I was three years old and too young to remember, I came back to the picnic blanket and took my sister by the hand. “Come on, honey,” I said. “Let’s go swing. It’ll be fun.”
That was all I had to go on, and it had to be enough.
6.
the sheep is between the table and the hamburger
It is not essential to have a special gift of cleverness to be someone with whom others are delighted to talk. An ability to express interest in another person and to express your own thoughts and feelings clearly and simply is sufficient for ordinary conversation.
—On Expression, EMILY POST’S ETIQUETTE
“WHY DON’T YOU shut up?” I heard my big sister mutter, and then she looked at me out o“f the corner of her eye. My face was red with embarrassment and shame, but something more complicated, too. Regret, the desire to be understood as a better person, or the desire to have actually been a better person. Margaret was sitting in the big easy chair in my living room, refusing to come to the table and eat with the staff members of her group home who had agreed to stop by my house so that Margaret and I could have a nice family visit. Is that really what I had been hoping for when I made these plans? “Margaret, don’t you want a sandwich?” This question came from Tami, the lead staff person. My big sister just shook her head again and, looking at me again, said quietly,
“Why don’t you shut up?”
MY SISTER MARGARET has a complicated memory full of hidden drawers and magic locks. Within it lies a strange ability to recall some bizarre minutiae and a failure to grasp many everyday occurrences, a quirk that is funny as often as it is heartbreaking. If I called her up right this minute, for example, she’d probably sit right next to the phone and just let it ring and ring. Maybe she would even get up and walk away from it. She has no social trigger, no urgency within her to respond to the sound of that shrill bell the way the rest of us do. This harbinger of communication simply holds no sway.
On the other hand, she might remind everybody, out of the blue, that our dachshund is dead. “Louie died,” she’ll say. “Louie’s dead.” It’s true, too, about Louie. In fact, Louie is long dead. He was already ancient by the time I was born, a nippy, grouchy miniature dachshund. Even so, I loved him with a child’s passion and mourned him when he died.
Years after his death, Margaret would poke her head in the kitchen door from the living room, where she was listening to her music, and say, “Hi, Mom. Hi. Mom . . . Mom? Louie died, Mom. Louie’s dead, Mom.” My mother didn’t even have to look up from whatever she was doing. She’d reply mechanically, “Yes, Margaret. Louie died.” And Margaret’s head would disappear back into the living room. My sister wasn’t fondly resurrecting his memory or sharing her grief about the loss of our first family pet. She just wanted to hear my mother repeat this phrase back to her. Louie died in the 1970s, and Margaret is still likely to bring up his death at Christmas dinner or Easter, for no apparent reason. “Louie died. Louie’s dead, Eileen. Eileen, Louie died,” she tells me. And she won’t let it drop until she gets someone to respond. “Yes, Margaret. That’s right. Louie died.” The idea is locked away inside her memory and pops up every once in a while like the alarm clock in the guest room that someone forgot to shut off.
How to Be a Sister Page 8