How to Be a Sister Page 7

  So I couldn’t very well expect her to make the next move. The ball was, eternally, in my court. But I didn’t know what I even wanted or expected. And I was frustrated by the same sense of helplessness that I’d felt for years. I mean, after all this time, shouldn’t I at least understand autism? I had lived and breathed it for the first twenty years of my life. It had haunted me for the last sixteen. I had worked alongside my parents, Margaret’s teachers, and student volunteers in helping her learn, helping her cope with our alien world. If I didn’t know this, then what did I know?

  But I found myself with more questions than answers, so I started reading. At first I was almost embarrassed. I felt like Melville’s Ahab cracking a copy of The Beginner’s Guide to Fishing, but I persevered. I read books by parents, doctors, and therapists. I read the life stories of Temple Grandin, Kamran Nazeer, and Donna Williams, people with autism who were able to write from the other side. As the publication dates on the books became more recent, the parent authors were suddenly closer to me in age than they were to my parents. But their basic story stayed the same. It was a story of lack—a lack of information, a lack of assistance from the medical world, a lack of support from family and friends, a lack of cooperation from the school system. It was my parents’ story all over again.

  But here and there, I saw a glimmer of what I was looking for: siblings. And my own questions clarified. What did brothers and sisters do? How did they cope? What were their responsibilities, ultimately? What were mine? Then I saw the advertisement for this film. And even though it was playing an hour away from my house in the middle of a weekday, I knew I had to go.

  I sat and watched the documentary, my heart full of emotion. If it were a nice feeling, I’d say my heart swelled. But it was more like a bulging, like it might kill me. It was a terrible feeling. Part empathy, part schadenfreude. The plot revolved around a woman, Elaine, who had decided to put on a musical with local kids—all with autism, including her son. The subtext of the movie, though, was the fierce hope and despair of the parents, the unending conflict that autism brought to their families, their marriages, and, of course, their children. Elaine killed me; her face was so full of hope. Her first husband had left. After many years of raising her son, Neal, alone, she’d met someone and become engaged. Now she and her fiancé together defended Neal from the criticism of the fiancé’s family, who thought he was just “a bad boy.” We had relatives like that, too, who thought my sister just needed “a good crack on the ass.”

  At one point in the movie, after all of their defending him, Neal did something rotten to a toddler at a picnic, the kind of thing I’d seen Margaret do. Pretending he was going to be nice, he yanked a little boy over by his arm and made him cry. And then the adults were sucked into this vortex of conflict—the toddler’s mom, who was trying to trust Neal’s mom; Elaine and her boyfriend, who knew he could act better; the little kid, who didn’t understand why he had been set up for a sucker punch. And Neal, who couldn’t explain why he had done what he did and cried and cried. It was clear that more than the picnic had been ruined. It was just one more tear in the social fabric, the emotional fibers, and the invisible bonds that held these people together.

  Watching their stories, I felt like I was at a family reunion, only everyone was so much better looking than me and my relatives, because the movie was filmed in California.

  When the lights went up, I stood up, wiping my eyes with my sleeve. Suddenly I realized I was not alone. There was another woman sitting in the back of the dark theater, also by herself, sniffling into a Kleenex. I felt like I should say something. After all, if she was there watching the film, we must be in this together, right? But words failed me, so I just smiled at her and she smiled back, and I walked out of the dim auditorium into the weak autumn sunlight.

  AUTISM IS A neurological disorder people are born with that impairs communication and social interaction. The Autism Society of America (ASA) describes it this way: “Autism is a complex developmental disability that typically appears during the first three years of life and affects an individual’s ability to communicate and interact with others.”

  The ASA estimates that as many as 1.5 million adults and children have autism today, and that number is sky-rocketing. The Centers for Disease Control and Prevention reported in 2009 that autism affects one in every one hundred children. When Margaret was born, researchers thought it was more like one in every ten thousand births. Autism crosses all racial, ethnic, and socioeconomic lines and is four times more likely to affect boys than girls. Most children, like my sister, are diagnosed around the age of three.

  A national advocacy group, Autism Speaks, makes the prognosis very clear on its Web site: “Currently, there are no effective means to prevent autism, no fully effective treatments, and no cure.”

  Autism is not something people outgrow, although depending on the severity of the disorder, people can learn strategies to deal with their symptoms. The most famous autistic person today is probably Temple Grandin, who still struggles with her disorder but has used her doctorate in animal science to become a professor, an award-winning designer of humane cattle yards, and the author of many books. She has also used her scientist’s mind to teach herself appropriate social interaction, which was completely foreign to her.

  Other people with autism, however, never learn to speak at all. Many, like my sister, will never be able to live without a vigilant staff to help them, because they simply don’t have the life skills they need to complete the basic activities of daily living on their own—grocery shopping, bill paying, cooking, cleaning, and driving.

  Although autism is a spectrum disorder, meaning it affects people in different ways, people with autism demonstrate a number of common characteristics. The ASA and other organizations identify the following among the well known: insistence on sameness, resistance to change, difficulty expressing needs, and repeating words or phrases in place of normal, responsive language. Other behaviors include laughing, crying, showing distress for reasons not apparent to others, and preferring to be alone. Tantrums are another, as well as lack of eye contact, sustained odd play, spinning, and inappropriate attachment to objects. Margaret did all of the above when we were children and retains some of those behaviors as an adult. She has also shown apparent over-sensitivity or undersensitivity to pain and no real fear of danger, which are other characteristics.

  While Margaret has severe autism and much of the difficult behavior that came with it, she has always shown a capacity for learning new things and for taking on more normal behavior. She outgrew many of her bizarre childhood compulsions that plagued our daily life, like smelling babies’ heads in church on the way back from communion. Or stopping in a crowd to run her finger up the back of a woman’s leg if she happened to be wearing pantyhose. Although she is still withdrawn at times, she no longer disregards the presence of other people so completely as she did when we were younger. She tends to greet people when she enters a room, sometimes enthusiastically, sometimes quietly. She makes eye contact and responds, as well as she can, to what people are saying to her, depending on her mood. She avoids interaction if she is stressed and sometimes tries to shut us out with music or rocking or tearing a piece of paper into tiny pieces. These ways of coping, while a bit odd, are certainly more benign than some of the things the rest of us do—drink too much, drink and drive, punch people, eat too much, seek the approval of strangers, or some combination thereof.

  I’m not going to make any sweeping statements about what Margaret is or isn’t capable of. Generally speaking, it appears to me that she is like everybody else I know, that her sense of the world is not static, and that she can learn and adapt to new situations. But I’m no expert, and I don’t know what she’s thinking. And I just don’t want to pigeonhole her, because people have been doing that to her since we were children.

  Nobody knows what causes autism, but the generally accepted notion seems to be that abnormalities in brain structure or function ar
e to blame. One recent study blames a deficiency in “mirror neurons,” specialized brain cells that might contribute to empathy and communication in typically developing children and explain a lack thereof in those with autism. So what could cause the abnormalities in brain structure or function or mirror neurons? Genetics, vaccines, food allergies, and environmental toxins are some of the more common theories, but no one knows for sure. Search the Internet, and you’ll get a different theory every day. One thing is certain: As more and more children are diagnosed each year, a growing number of people want answers.

  AUTISM. TO ME, this word has always taken a long time to say. It is a ten-syllable word. The letters spiral out of my mouth and into the air. I’m afraid to finish saying it, because once I let go of the word, everybody will know something about me. When I say “autism,” I feel the weight of the letters resonate beneath my collarbone as if the word is tattooed on my skin. When I hear the word in the mouths of strangers, the mouths of teachers, the mouths of celebrities, my heart constricts. I feel lonely and familiar at the same time, homesick, like someone is talking about a place I used to live. Autism. Look, I’m showing my scar. My sister has autism.

  Autism. In my mind I see the word spelled out in red-brown cursive with orange speckles sprinkled across a tan background. Autism smells like bouillon power, like spices, like the lingering aroma of dehydrated vegetables clinging to the empty foil soup packet that Margaret carried around for months one year. She needed to have it clutched in her hand wherever she went, her magic feather for getting through the seemingly insurmountable obstacles of an ordinary day: waking, walking, eating, and being spoken to.

  Other talismans followed. For a while it was a red plastic hammer from a childhood carpentry kit. She wandered around the house and yard with that scarlet mallet always at her side. Another time it was the worn scrap of a favorite record cover. She’d hold it in front of her eyes, flipping it back and forth, mesmerizing herself. Later, my sister treasured a worn and tattered hardcover copy of Heidi that sat on the arm of the sofa. Avid readers, every one of us, we never read that story, partly because it was imperative, for several years, that the book be in plain view at all hours on the arm of the couch, preferably at a particular angle. I can remember that when I cleaned the living room, I would carefully dust the arm of the couch and then put Heidi back—just so. Heidi was for spinning.

  Margaret spun the book on her knee as she sat on the living room couch, spinning and twirling the book in perfect rhythm for hours as she listened to her music. Twirl, pat, pat. Twirl, pat, pat. Twirl, pat, pat. The book was a steering wheel beneath her quick hands as she seemed to mimic our mother driving the car. She didn’t have to look down to keep herself on course, steering through a confusing world of other people and noise and language. She didn’t seem to hear us as we moved around the house and through our lives while she inhabited her own world and held down that corner of the sofa.

  Summers she needed to have the orange corduroy cushion at our lake cabin to spin on her knees and pop into the air with her ankles high overhead, catching it on the tops of her feet, perfectly balanced every time. She’d lie on the floor at the bottom of the stairs, spinning, popping, and kicking for hours if we’d let her as music blared out of the speakers in the next room. She was oblivious to all the people who had to step around her to get to the second floor, where the bathrooms were. She never missed a single catch, and when she wore a hole in the fabric with this routine, she chose another orange cushion from the pile and started over. The cushions were, blessedly, interchangeable in her mind, something that rarely happened in this kind of situation; Margaret usually saw through our efforts at substitution and became inconsolable if a particular item went missing.

  I tried the cushion myself once and got nowhere. I couldn’t get it to spin, and I certainly couldn’t catch it with the same finesse. Margaret was the spin master. However, her expertise at cushion popping seemed less cool when I got old enough to realize no one else was doing it. Our friends would stop and stare, puzzled at the sight of one of the “big kids” lying on the floor and ignoring us. “That’s just Margaret,” I’d say, wondering what they were looking at. What was the big deal? As if to say, “We eat cereal for breakfast. What in the world are you staring at?”

  One summer the autistic talisman was a cast-off wig that Margaret simply couldn’t be parted from. What must have once looked like hair when it first landed in the toy cupboard now looked like some kind of small roadkill. My sister wore it all day long in the hot summer sun and put it on again with her nightgown after her bedtime bath. Adding the wig to her cushion routine, she looked even crazier. We have some pictures of that summer, the whole family crowded out on the front steps. Margaret is looking at the camera out of the corner of her eye, one arm hooked around my mother’s neck as she smells my mother’s hair, the wig askew. She looks like an extra from the Muppet Show.

  Another year my sister was obsessed with a blue plastic hairbrush—the only hairbrush in our pathologically thrifty household. She had to know where it was at all times and checked on it several times a day in the bathroom cupboard. This, like every preferred item du jour, always had to be in the same place. If ever it was misplaced, my sister became distraught, then enraged, as if this small piece of plastic were the key to keeping her world righted. And of course things went missing. In a house full of children, nothing stays where it is supposed to.

  And Margaret would howl. “Where IS it?! I don’t know where it IS! WHERE IS THE BLUE BRUSH! DO YOU WANT THE BLUE BRUSH! AAAAAAAAAAAAAH-HHHHHH!” Her screaming could last for hours, leaving her exhausted and the rest of us staggering around like a cyclone had just passed through the center of the house.

  Another season, Margaret’s autism zeroed in on the strange black bee crawling up the broad picture windows that looked out onto Lake Coeur d’Alene from our summerhouse. She had never shown the slightest interest in insects before, but now she was spellbound. When it stung her hand, she hardly cried at all. Even after her eyes puffed up from an allergic reaction, she was more interested in the bee than what was happening to her. But when she tried to get a closer look at it and smashed the fuzzy creature with a pair of binoculars, all hell broke loose. Her autism wailed in frustration. “The Bee! Where is the Big Black Bee! I don’t know where he IS! NOOOOOOOOO! You want the Big Black BEEEEE! NOOOOOOO!” She struggled with the limp bee body, trying to force it to climb back up the window. When this proved futile, she became hysterical and the small bee body crumbled into pieces. I tried to smash the flaky little pieces back together into some semblance of an insect, but it was the Humpty Dumpty of Big Black Bees. One of my brothers located a large black fly and offered that as a substitute, but Margaret wouldn’t buy it. She just kept screaming. Miraculously we found another Big Black Bee—dead, but in one piece—and taped it to the window so she could watch it. She wouldn’t go to bed until we’d taped the Big Black Bee to the inside of a plastic cup and put it next to her bed on a chair. “There he is! Okay! That’s better now!” she said, taking deep, calming breaths, still stuttered with sobs. Then the autism slept. After a few days she forgot all about the bee, and her quick, impulsive mind seized upon something else. The plastic cup with the bee taped to it gathered dust for weeks until finally somebody thought we were safe and threw it away.

  I KEPT SEARCHING for answers, reading whatever I could find. In my deepening appreciation for this disorder, I recognized that autism could be many things to many people. To the parents of people with autism, it often brings a crisis, a life sentence, a tragedy. Being the parent of a child with autism brings loneliness, anger, despair. The parents suffer the loss of the child they will never have, and often they don’t even have time to grieve, because they are too overwhelmed with the child they do have along with all the problems she’s got.

  Autism also brings parents hope and the motivation to act. Marriages are ruined or strengthened. Careers are destroyed or somehow clarified. Friends and relatives disappear
or make significant and treasured contributions to the family. Sometimes, somehow, a disability simply becomes blended into the reality of life along with everything else, good and bad. As Helen Featherstone writes in A Difference in the Family, “We were knitting Jody, and our new identities as mother, father, and sisters of a severely handicapped child, into the fabric of an ongoing life.”

  For people who have autism, the disorder is a burden or a challenge, something to overcome, or perhaps not. A battle against the outer world, a system. Autism is the lack, the missing elements of empathy and intuition that allow people to connect with others. It’s a different life colored by the expectations of other people that autism means magical ability or stupidity. Autism is a trap or a safe haven. It’s a world of loneliness and isolation and a place of creativity. It’s a bull’s-eye that makes a person a target for abuse or a yardstick of accomplishment through improvement. Maybe it’s a defining feature of a personality or just one characteristic of the many complexities that make up a person. Every life is different.

  Thinking about this, I couldn’t imagine what my sister would make of her autism. Me, I was just trying to see the person who I thought was in there with it.

  WHENEVER I MENTION that I have an autistic sister, people always ask me what Margaret is like. What they really mean, though, is what is her autism like. Is she like Dustin Hoffman in Rain Man? Does she have weird mathematical talents? What does she do? I have stopped trying to answer those unspoken questions, because the truth wouldn’t make sense to the curious. The truth is, I don’t really know how to explain autism or my sister. I can repeat the accepted definition of autism. I can rattle off new theories that I hear on the news almost weekly. But none of that seems definitive or concrete to me, and none of it seems to describe my sister, the living, breathing person. I only have my experience to go on. And as I grow older, it becomes more important for me to try to explain it to myself.