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Print This Article Thursday, April 1st, 2010 On spectrum My daughter, her autism, our life Sally Tisdale We moved into our house more than twelve years ago. Robert lived two doors down. He was about eleven, and had just begun learning how to ride a skateboard. He built a little wooden ramp, and many sunny afternoons were marked by the rough, irregular whir of the wheels along the sidewalk and up the ramp, followed by the clatter of his broken landing. We had a basketball hoop at our house, and all three of our children played. Over and under the wheels of the skateboard I heard the whapping bounce of a ball on asphalt, clanging suddenly against the hoop. Gradually the whir down the street grew faster, the landings softer. I heard the wheels less often, and then not at all. And after a while, Robert was gone, off to college. Our two sons moved out within a few months of each other, and I heard the basketball less often, and then not at all. My daughter, Annie, still lives with us. She is twenty-six now and at the moment is sitting on the porch, looking out at the street. Soon she will come in and pace for a while, her head down. Later she will read the first few pages of a book—the same book, the same pages, that she read last week and the week before, and will read again tomorrow. My husband, Bob, and I adopted Annie and her older brother, Rafael, when she was a toddler and he was about nine years old. We already had a seven-year-old at home. We knew Rafael was Deaf, so we were happy to be told that Annie was healthy. We met the children in a bare office at an orphanage in Guatemala City. Rafael was freshly scrubbed and stood at attention, scared. A young woman in a white apron handed me Annie—a tiny, skinny thing, ridden with parasites, sucking on a hard candy. I set her down to get her a bottle and she fell over, unable to stand. The Guatemalan doctor who examined Annie told us she was severely retarded and might never walk or talk. “Take her back and get a different one,” he said. Four days later—four days of long-distance calls, surges of hope and fear—we flew home to Portland. In time, Rafael discovered bicycles, scrambled eggs, and ASL. Annie began to walk and talk. But the malnourishment and night terrors were more difficult for her to overcome. Intensely shy with strangers, she was cheerful and amiable with us, and often invented little games. As she gained weight and strength, she began to run and sing and dance. But she was very small, and way behind in developmental milestones. We had genetic testing and hearing tests and all kinds of exams done, but no clear diagnosis emerged. She met the milestones—behind and slow, but she met them. And then she sort of stopped meeting them. I know now that Annie does not have a developmental delay, as for many years we thought she had. She has a developmental disability: her limits are not, in other words, amenable to change. She has a form of high-functioning autism, shading into or interwoven with severe learning disorders. At first, most people don’t notice anything unusual about her. (She’s been on jury duty twice in the past few years.) Then people find out how old she is, that she still lives at home and doesn’t work, or socialize with people her own age. She gets along well in a casual conversation, especially with people she knows. She goes to the gym, rides the bus. She is usually patient with children, a good aunt to her brother’s children. She can play several sports—soccer, dodgeball. She can beat me at games like Sequence that require both counting and pattern recognition, but she can’t follow a recipe or make change. She can put jigsaw puzzles together in a few hours, but she writes laboriously and can’t spell. She mixes up left and right. She reads slowly, often going over the same paragraph several times—not, I’ve come to realize, entirely for comprehension; she reads the same words again and again because she likes to do that. The Centers for Disease Control estimate that one out of 110 eight-year-olds is now diagnosed with an Autism Spectrum Disorder: a lifelong, incurable neurological developmental disorder that is disabling even when mild. ASDs are now considered the second most common developmental disability, though many health professionals are still unfamiliar with what a “spectrum disorder” is—that it manifests in many ways, from mild to severe, that every person experiences it a little differently. Twenty, even ten years ago, autism was thought to be fairly rare, and it is unclear whether the increase in numbers reflects better diagnostic skill or a real increase in the disorder. (Karl Taro Greenfeld—whose brother, Noah, is one of the more famous autistic people in the world, thanks to a series of books about him written by his father—calls autism “among the most financially successful and mediagenic diseases ever.”) Rates vary in different parts of the country, possibly reflecting environmental causes, or professional experience, or something not understood at all. ASDs occur four times as often in boys as in girls, and they tend to run in families. From 10 to 30 percent of those with the disorder have some form of epilepsy, and up to 80 percent have some degree of retardation. Autism is defined by global deficits in information processing, difficulty with language, with memory, with managing tasks. Most people diagnosed with autism score below 70 on intelligence tests, though such standard tests are problematic with people who do not use language in normal ways. It is undeniably true, however, that people with autism are often functionally retarded. Skills and deficits are unpredictable; every area of ordinary life is disordered in some way. There is consistency of a kind—in the poverty of expression and of what is called executive function: the ability to plan and organize, to focus and attend, to look ahead, to respond creatively to change. Most people know about autism from portrayals on television and in films—behaviors like spinning, shouting, finger-flicking, head-banging, toe-walking; children who play alone in a corner, or people who cannot make eye contact and never smile. These are common symptoms of what is sometimes called “classic” autism—a severe disability that almost always manifests in early childhood. High-functioning forms of autism are harder to diagnose, their expression more subtle and inconsistent. Some researchers believe that we are all on the same spectrum, that autism is simply a far end of neurological development. Thus, the language evolves: I hear the phrase “on spectrum” for those with diagnosed autism, and “neurotypical” or “typically developing” to mean the rest of us. Autistic people are overwhelmed by sensory data. Sounds and textures and visual details cannot easily be edited or prioritized. People with autism tend to focus on simple and immediate and generally solitary tasks, on sameness and predictability, especially when they’re tense (which is often, in this noisy world). Extreme anxiety and depression are common. Autistic people develop endlessly individual sets of patterned behaviors that serve, writes Kamran Nazeer, an autistic adult, to satisfy “a desire for local coherence.” We all have local coherence of some kind, but competing coherences don’t work socially; there must be something shared: a room with only autistic people in it is a room of non-intersecting and self-contained local coherences. Relationships of every kind are difficult. Poor social skills are a mark of the disorder; in particular, a lack of what is called “reciprocity”—the give and take of ordinary social interaction, the ability to listen, to empathize, to respond in kind. Autistic people tend to have few, if any, friends and consequently may suffer a deep loneliness. What do social courtesies mean when words themselves are hard to understand? How does one engage in small talk when facial expressions have no meaning, when nuance and humor are opaque and metaphors make no sense? People with autism may know they have what one researcher calls a complex of “persistent and seemingly intransigent difficulties” in simply being able to talk to other people. But knowing is no cure. Annie cannot have a conversation while the radio is on. She simply doesn’t hear me talking. It’s easy to give her too much information, too many instructions at one time; she is easily confused. She is prone to wandering off during a conversation. She tends to eat the same food for breakfast and lunch for weeks at a time and to wear the same kind of clothes regardless of the weather. She often forgets to take her medicine. And I remember, every day, that Annie’s condition is relatively mild, that she is high-functioning—that it could be so much harder. She paces and fidgets and draws elaborate mandalas. With higher-functioning people (more neurotypical, more tuned in to the shared local coherence), the extreme behaviors are often absent. Instead, they may be preoccupied with a narrow subject like bus schedules or calendars. Annie copies: math problems from an old textbook, words from the dictionary, instructions from a product guide. Sometimes she copies for hours. It took me a long time to begin to understand what was wrong, what was needed, what to do. I still make a lot of mistakes, but I’ve learned to break down tasks step by step, sometimes into one word or phrase at a time. I now stop talking when she gets upset. I’ve also learned to insist on her discomfort sometimes, to show her she can and should do some of the things adults do even when those things are really hard. I spend hours each week on the maddening bureaucracy (and in gratitude to the immense largesse) of Social Security. We have multiple medications to manage, trips to the doctor, trips to the pharmacy, calls to various professionals, and, always, planning how to help her stay busy, find her way, make a life. Annie paces and paces and paces for hours in her big running shoes, back and forth in the kitchen. I sometimes think of her repetitive behaviors as a blanket over stress or depression or boredom—an anodyne to the fundamental anxiety of cognitive dysfunction. I try to remember that her pacing is about coherence—a function for the unfunctioning. And it sometimes drives me mad. “Stop pacing, please,” I finally tell her. “Okay,” she says, head down, continuing to pace. An hour later I am brushing my teeth, getting ready for bed, and she is still pacing across the kitchen floor. Clomp clomp clomp. “Stop pacing!” I holler. “Okay!” she says, head down, pacing, back and forth. She becomes stranger, less explicable, as time goes by—as our time, ordinary time, diverges from her private inner time. Annie is a peculiar, sweet, amusing person, irritating and courageous. She is a gift and a conundrum and a ceaseless surprise. I used to say she was born to be a child—she was radiant, amiable, a great pleasure. She still makes me laugh almost every day. About 65 million Americans are caring for ill or disabled family members in any given year, according to the National Family Caregivers Association. For many people this is a brief period in midlife when they help care for aging parents. About 20 percent of the population have some kind of defined disability, but exactly how many live where, how many people are providing daily care for spouses or parents or siblings, no one really knows. The Census Bureau has just begun tracking the number of grandparents rearing their grandchildren, but they don’t follow parents caring for their disabled adult children. These numbers are going up. Better health care means that disabled and chronically ill people live longer. Disabled people who once would have been institutionalized in childhood now stay home with their families and attend local schools. (The list of disabilities that can pin a child to his or her parents for the long haul is quite lengthy—Down syndrome, glaucoma, congenital heart defect, porphyria, cystic fibrosis, leukemia, epilepsy, head injury, stroke, fetal alcohol syndrome, cerebral palsy, muscular dystrophy, spina bifida, and an array of rare genetic disorders most people have never heard of.) Decades of government policy and a Supreme Court decision, Olmstead v. L.C., have established that public services for all disabled people must be provided in the least restrictive and most integrated environment possible. States are required to create community-based services, but the broad vision of deinstitutionalization—a new society of supervised or modified places to live and a network of support services—has never materialized. The community-based alternatives that do exist—group homes and respite centers, supported workplaces, day centers, social work, skills training, and assisted-living facilities—are overwhelmed. The system strains and shrinks. For a good many people, the least restrictive environment is the family home. In spite of (and sometimes because of) policies that mandate community-based care, it is easier to find services for some disabilities than for others, easier to get help in one area than in another, easier in one year than in another. That the family is often the best caregiver can lead to the belief that the family doesn’t need help. Parents, writes researcher Nancy Breitenbach, find that they must “demonstrate without a doubt that they are unequal to the task and that they need help. Doing one’s duty in difficult circumstances is seldom enough to merit aid. Parents may have to present an image of defeat if they wish to gain anything.” A parent adds, “You shouldn’t have to break down in order to get services.” How far does parental duty go? It’s an open question, and the answer shifts with time and culture and crises—war, famine, economic cycles change the answer. On my toughest days, when I am full of resentment and sadness, I still know there is no one else who should take care of her. She’s mine. I chose her, I love her, she knows no other home. It is not the money, or even the time. It is simply that I had other plans. Caregiving is not benign, not just another kind of job. It can and does unbalance families and break up marriages, disrupt careers, lead to financial ruin and ill health. People caring for disabled adult children have less lucrative jobs than their peers do, and higher rates of alcoholism and depression. Latino and African-American mothers with disabled adult children are more likely than European Americans to receive help from family members. But they are still much more likely to suffer from depression, arthritis, diabetes, and heart problems than are their counterparts with “normal” children. No one starts a family believing that a child will cause bankruptcy and illness. No one expects heartbreak; we are psychically protected against such fears, bound in a tight biological web to hope for the best with every child. I remember how readily (albeit with considerable naiveté) I became the mother of a Deaf child—I had some idea, at least, of what to expect, how to prepare. (I learned quickly that the Deaf community has many vocal members who have no interest in being fixed or in any way labeled as disabled. Now bumper stickers appear: honor neurodiversity.) Is giving birth to or adopting a disabled child qualitatively different from having a healthy child who grows into an adult and then changes? This happens often enough with mental illness—schizophrenia, for instance, often manifests in the early twenties. And more than 30,000 veterans have returned from Iraq and Afghanistan with visible and sometimes devastating wounds and disabilities; as many as 640,000 who have post-traumatic stress disorder or traumatic brain injuries may have trouble living independently again. The element of surprise is part of the struggle. We were told often not to worry—not to rely on tests, schoolwork, report cards, even on Annie’s unhappiness, as a prediction of what lay ahead. We delayed sending her to school, and then everyone agreed that she should repeat first grade. She struggled in second grade and was tested frequently in third grade. Then she was diagnosed with multiple learning disabilities—a jumble of average and below-average and way-below-average scores. An IEP—individualized education program—was written, setting goals and a “modified” curriculum of less work and more time to complete it. She never reached most of the goals, but every spring we reviewed them and every fall she was promoted a grade. On her report cards are comments like “commendable effort,” and “homework not being completed,” and, always, “working in a modified curriculum.” We missed things—everyone did. It took me years to grasp what it meant to have executive-function deficits. The school’s emphasis was always on mainstreaming, keeping her out of special-education classrooms as much as possible. Labels were frowned on, and standardized testing was out of favor. Everyone was always very positive. Gradually, her time and our time began to diverge. By middle school she was tense and nervous much of the time, increasingly lonesome but unable to make friends. She spent hours on homework, but even with all the modifications, she couldn’t keep up. A few teachers simply flunked her. But middle school is hard for a lot of kids; we assumed the tension and the loneliness were malleable, a matter of learned skill. She was shy; she would adjust. Her neighborhood high school was a huge complex with almost two thousand students; just walking through the halls was overwhelming. We moved her to a magnet school with small classes. She seemed a little happier there, though she tells me now that high school was the worst time of her life. She had few friends and no dates, and except for watching the occasional basketball or soccer game she did little away from home. “We don’t want to label her,” I was told again and again, labels follow children for their whole lives. Labels make it hard to get a job, hard to get into college. Perhaps we should have recognized some of her problems; others were impossible to see at first. Our state required a battery of standardized tests in high school, and she squeaked by with the minimal passing score a few times. Her federally mandated transition plan was merely a suggestion that she try some classes at the local community college. Her IEP team was blithely optimistic about the future, and she was awarded a regular diploma. She tried remedial classes at the community college, and we started looking at roommate ads and thinking about what she could afford. But she couldn’t tolerate the noise—the people, the stimulation, what felt like constant pressure—and quit. She got a part-time job with the help of the Office of Vocational Rehabilitation, washing dishes in a restaurant. She was so game about it, so serious and determined, but it was all too much, too exhausting and stressful and scary. She quit. One December day she began hallucinating—she heard voices, screaming car alarms, people breaking into the house. It’s still hard for me to remember that time. Annie started seeing a psychiatrist, and I held my breath. She responded to a small dose of antipsychotic medication and has never shown any signs of schizophrenia. (I have since discovered research showing that a number of people with autism have what appear to be psychotic and delusional symptoms, which may in fact be symptoms of their disordered thinking. Diagnosis of true psychosis is difficult in this population.) The psychiatrist finally led us to a diagnosis that seemed to fit: Pervasive Developmental Disorder—Not Otherwise Specified. PDD is a controversial diagnosis—more of a description than an explanation, an umbrella term that includes autism and other, rarer developmental disorders. People who fit some, but not all, of the criteria for different specific disorders are considered “not otherwise specified”—PDD-NOS. Social workers talk about the burden of caregivers. They distinguish between objective burden—the actual physical labor of care—and subjective burden, described by two Israeli social workers, Chaya Schwartz and Lilit Hadar, as “the gamut of negative emotional reactions to caregiving, such as stress, tension, anger, worry, sadness, and feelings of guilt and shame.” Considerable time and effort have been expended to prove that subjective burden is the harder to bear. I could have saved them the trouble. And still, surprises. She didn’t feel well, slept long hours, lost weight. She tried taking classes again, and quit again. She eventually got another job—another on-call, part-time, minimum-wage job—and struggled grimly and finally quit. She lost more weight and got quieter and sicker until the day came when we got yet another diagnosis: autoimmune polyendocrine disorder. This syndrome means that multiple hormonal systems have failed, but the most significant problem is adrenal insufficiency. This means that her body doesn’t make stress hormones—the constantly shifting balance of chemicals with which we meet the challenges of even an ordinary day. For that, she needs carefully calibrated medications several times a day. She has to manage her weight, her blood sugar, and her blood pressure, as well as stress and trauma. Her cognitive disorder both makes her susceptible to stress and trauma and makes it particularly hard for her to manage a tricky disease. We applied for Supplemental Security Income, the form of Social Security meant for disabled people. According to SSI criteria, Annie is fully disabled, and she now receives a small but reliable monthly check. (Her condition is reviewed every three years, in case she improves and becomes more independent.) In turn, SSI made her eligible for Medicaid, a blessing for which I am more grateful than for any other help we’ve received. But in one of the more maddening moments I’ve experienced, she was denied services by the county on the grounds that she has no “adaptive impairment”—in other words, she can manage life just fine—and because her diagnosis wasn’t established by the time she was eighteen years old—in effect, because she hadn’t been labeled. Being denied county services is no small thing, for she has been denied money for skills training and access to most opportunities for supported employment or housing. I recently called a private nonprofit charity in Portland that offers residential and employment support for developmentally disabled adults. They wouldn’t even accept an application without county eligibility. Much research has been devoted to the experience of parents who care for disabled children, but it generally is done by social workers and is filled with that discipline’s numbing jargon and exaggerated cheeriness. As a parent struggling to accept my situation, I’m supposed to do “benefit finding” by using a “meaning-based coping process” and seeking “positive-toned emotions.” I should “positively evaluate” my circumstances, “thus minimizing or mitigating the negative implications” and discovering “hope”—that is, “a cognitive set that is based on a reciprocally derived sense of successful agency.” A sense of successful agency is a good thing. Once I have it, “it is essential to set goals and work toward achieving them,” however small they may be. Parents do identify genuine rewards—from simply enjoying their children’s company to delighting in their achievements. But in all the studies I have read, rewards are less common and harder to identify as a child grows. And as the children get older, they get bigger and heavier while still needing much of what they needed when they were small. Adult disabilities contain an inherent ambiguity: people are both adult and child at the same time. Roles are crossed, developmental stages are blurred, and there is no objective place from which to form relationships. With developmental disorders, there is an added layer of confusion because people often appear neurotypical; they function well in some situations and not in others. Ambivalence is a normal state for me. It is hard to articulate what I seem to have lost, because it is something I never had. Annie was never going to go to law school—we knew that. Eventually we knew she was not even going to drive a car. What I miss is something vague and dreamy about a daughter growing up. I have fantasies of high school girls giggling in a bedroom behind a closed door, of long phone calls. I feel grief for the past, for all that there was none of, and grief for the future, for what there may be none of yet to come. Every parent loses a child, several children, as each successive child passes into the next—the chrysalis of the infant becomes the toddler, the toddler gives way to the child, the child to the youth and finally the adult. This is one element of being a parent, of being alive, though there is an enduring sorrow in realizing not that the child has died but that the adult anticipated will never be born. I feel sad and sorry for myself or pissed off, and then I feel petty because I’m sad and sorry for myself, because I’m complaining when things could be so much worse. She’s not aggressive or incontinent. She can walk and make herself a sandwich and sleep through the night. She can be alone for hours at a time during the day. And we’re lucky, because late as it was in coming and vague as it is in explaining things, we did eventually get a diagnosis. How many thousands of people struggle with adult children who are simply immature, addicted, irresponsible? “I’m at the end of my rope. My son is currently going to be homeless in a Northern state where the temperature is below zero. How can I not help him?” asks a mother, plaintively, and I have no answer. What about all the people who are barely holding on to a crappy job, missing car payments and rent, forgetting to take their medicine and use birth control—the many people who have never been diagnosed as anything but slackers or losers or genetically weak and may in fact have high-functioning autism or mild retardation or learning disabilities but qualify for exactly nothing? Long-term studies of people with autism are not reassuring. Autistic adults generally read poorly, have few math skills. Very few go to college, are employed, or lead independent lives. The majority say they have no friends. About half of young autistic adults live with their parents, and many parents end up doing more, not less, for their child as the child ages. The supports of school are removed, and nothing takes their place. Karl Taro Greenfeld notes that for severely autistic people, “graduation is perhaps the saddest day in their lives.” I work part time as a nurse. I come home to an empty kitchen. I thaw out something and we eat. Then I check email and pay bills and do accounts for more than two hours—paying our bills and her bills, balancing our checkbook and her checkbook. By turns she has been testy and worn out. I am frustrated and testy myself. She resists my questions until finally I almost force her to lie down so I can check her orthostatic blood pressures. And they’re not great, which means her kidney function may be off again, and that means another call to the endocrinologist and more adjustment of medication. I have, finally, started getting some traction on my own writing, just started to focus again. But to do so I have been pulling back from exactly this—the daily chores and details. I am constantly reordering my priorities. She cannot do this alone. My resentment, my frustration, extends only as far as the next threat; all of it vanishes when Annie is threatened, when I am talking to doctors or to Social Security or standing between her and a hard world. The medications have serious long-term side effects. I worry about these side effects and I also worry about what happens if I can’t keep paying her extra bills. But the most terrifying threat, the one all family caregivers must face, is the future. And that is how she put it, one day a few months ago, after a therapist asked her how she saw the future. She walked in the door, burst into frantic tears, and wailed: “What’s going to happen if you die?” I keep waiting for a singular passion, the kind that sometimes comes with high-functioning autism, something that would help her define her life. She has taken tai chi, African drumming, taiko drumming; swing dance and flag football and dodgeball and kickball and guitar. She reads about meteorites and horses and soccer. She plays video games. She practices tying knots for hours. And then I realize that she hasn’t played the guitar in weeks, that she suddenly stopped practicing tai chi months ago. She is always interested and she always loses interest. The few studies of autistic adults show that a particular interest is a source of happiness for them—what the doctors would call “a good outcome.” But a recent comprehensive study of adults with pervasive developmental disorders concluded, as have many other studies, that quality of life is hard to measure in people who don’t talk or who express themselves in unusual ways. Are the unusual behaviors of autism neurological tics, or symptoms of depression, or anxiety, or signs of pain, or simply different ways of responding to stimuli? How can we assign meaning to behavior when a common reality is not shared? To be neurally atypical is to be wired differently, to be processing everything differently, to interpret the meaning of each moment differently. I cannot imagine what it is to be that way. Annie doesn’t think like me; my frustrations are not the same as hers, and neither are my satisfactions. She may not miss what I would be missing if my life were hers; she might not value what she had if her life were mine. What is intimacy for her, and does she really want or need it? How she imagines independence—a “real job,” an apartment of her own—I can’t say; her descriptions of it are vague and contradictory. She thinks she wants a boyfriend, a social life, but shies away when either comes near. Intimacy for her may just be the familiar—home. I try to look ahead. There is progress. (And aren’t we lucky? Because many parents are not seeing progress in their aging children.) I think she may someday be ready to try supported living away from us. As I write this, I sense a spike of maturity in her. She’s having a good week, a good month. Doesn’t everyone have bad days, bad weeks, bad years? There are days when she feels lousy one way or the other—when her blood sugar is off or her blood pressure is low, days when she is lonesome or bored, days when the future seems vague and scary. I don’t want to deny her the right to struggle, to change, to have bad days. In a more expansive view, my sorrow and irritation stem almost entirely from the belief that she could be different, should be different, and that my life could and should be different. But what’s wrong with this soft summer day and her slow pacing in the side garden, eyes on the grass, humming to herself while I wash the dishes? I think, “She was born to be a child,” and in the next breath, I realize how my thought condemns her. She was born to be herself, and nothing more or less than that. A few days later, a friend is telling me about his teenage daughter, their discovery that she has unexpected health problems likely to linger. “It’s such a tragedy,” he says. And suddenly, I am on his daughter’s side. “Don’t say that,” I tell him. “Don’t ever say to her, and don’t say to yourself, that there is any tragedy in who she is. She is what she is.” Sallie Tisdale’s last article for Harper’s Magazine, “Chemo World,” appeared in the June 2007 issue. Her most recent book is Women of the Way: Discovering 2,500 Years of Buddhist Wisdom (HarperCollins). Print This Article |
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Voice of the Environment is a 501 (c-3) not-for-profit Montana-based corporation formed in 1991.
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