What I first recall is the head-pounding. We were sitting at the dinner table and Lawrence rose, his head thrust forward, and bolted for the wall, banging his head against it as hard as possible. My father flung down his fork and rushed toward him, pressing his hand up against the wall to cushion the blow, begging him to stop, but Lawrence didn't stop, couldn't stop.
When I originally applied to present a paper at this conference, I was not thinking about my own story, about my own writing about autism, my experiences with autism as the sister of an autistic man and the writing I myself have done about his life. Yet the two are of course inseparable. My notions of what a "self" is have surely been affected by living with a disabled sibling. My own understanding of language and identity grew hand in hand with watching him attempt to construct his. I could not disconnect my own story from his. What I was planning to write, therefore, changed dramatically, moving from a detached, critical perspective, analyzing the construction of "self" in the "autistic" memoir, to a rendering of my own story. Writing about Lawrence from a detached, critical perspective, for me, as the sister, seems almost autistic in itself--withdrawn, rote, disconnected from the human experience. I was going to use performance theory to articulate the encoding of the self. I found that I could not do this without distancing myself from my subject matter in a way that I found increasingly uncomfortable. I did not want to feel detached.
What I have learned as a writing instructor, a daughter, a sister, and a writer myself, is that writing is a way of entering into the human experience, understanding the self, and also a way for many to heal. I observed this in my own writing, as I continue to explore my relationship with my brother and my mother's own pain at the hands of the psychiatric profession, and I have observed it countless times in reading memoirs about autism as well as those by people existing outside the mainstream: women and other minorities. For when I was first growing up, there were few accounts of autism; now, there are hundreds. And when I was first growing up, memoir itself was a small and fairly ignored genre, unless it was written by white men like Benjamin Franklin. However, the genre itself has grown in part because it has made room for voices outside the mainstream: women and other minorities, the disabled--although oftentimes these memoirs are viewed as "confessional" and taken less seriously. Despite this, there has been a healthy explosion of memoirs--particularly those often viewed as "confessional"--in large part because these perspectives have been silenced for so long.
Images have been burned into my mind over the years: of that tall young teenager, tanned, slim, blonde, outwardly looking like the all-American boy, rising up from dinner where were all sitting, proceeding to try and hurt himself, and my father repeatedly placing himself in harm's way to try to keep him in one piece.
Lawrence also liked to sit in the living room, pounding on his stomach, laughing, a strange hyena-like laugh, or sit and twirl pens or underline the same sentence in a book until the pen broke through the paper. When Lawrence was a young boy, my father remembers that he could put things together and make the most intricate patterns with Legos, or sit endlessly flipping through the pages of the Sears catalogue. While I would sit with the Sears catalogue every year right after Thanksgiving, circling what I wanted and starring what I really, really wanted (the catalogue was filled with circles and stars), Lawrence simply rocked back and forth, turning the pages over and over, without any seeming desire to possess the bright and shiny toys inside.
Seeing him like that sometimes made me feel very small and frightened, the strange sensation that everything was out of control, a feeling that often sent me up to my room to shut the door and lose myself in a book, to try and ignore the strange behavior going on around me.
Later I would come to understand that this behavior had a name: autism, that strange disease first explored in an article by Leo Kanner in 1943. Although many of Kanner's theories have been discredited, he described autistic individuals as being unable to relate to others and shutting others out. Also, they needed predictability and had trouble communicating and understanding other people.
My parents first realized that something was wrong when Lawrence was three years old. My father met my mother in Germany when she was twenty-four and he thirty; they married and came back to the United States to Storm Lake, where he had a job teaching history at the local college. Lawrence was their first child, a beautiful blonde-haired baby boy. Things were not right with Lawrence, although they didn't realize it at the time. In later years, when Lawrence was grown, my father speculated that the delivery may have affected the baby: my mother was kept waiting while the doctors in the small hospital finished working on another patient. Recent studies, cited in Uta Frith's Autism: Explaining the Enigma , indicate a high incidence of birth complications with autistic children. At the time, of course, no one knew of this. What was known were Kanner's theories: how he had interviewed countless parents and decided that they were responsible for the condition of their child. Kanner classified autism as an emotional withdrawal from the world, noting that the parents of autistic children were by and large professional, highly educated men and women. My parents fit this classification. He also felt the parents (particularly the mothers) were cold and intellectual; hence his definition of the mothers as "refrigerator parents" whose inability to love caused their child's emotional isolation.
But when they first drove Lawrence to Iowa City, when he was five or six, wondering why he didn't talk like other children but simply repeated what was said to him, they didn't think autism. Few people did at the time. Autism then meant being relegated to a mental institution for a lifetime.
Being Lawrence's sister made me feel protective towards my mother. I read in the few memoirs lying around the house how this was my mother's fault, but even then, I knew that this could not be true. I sat in the chair, the large green clinical book in my hands, and read about how she may have caused his condition, and I slammed the book shut. I knew who she was, and I knew that this simply was not true. I skimmed a few of the personal accounts that they had on their shelves, such as Clara Claiborne Park's The Siege , or For the Love of Ann and Sonrise . I started writing then as a way to escape. I often tried to think of my life in fictional terms, painting everything that happened around me as a story, as in: the young heroine rose in the morning and ran toward the bus stop, swinging her lunchbox. That made everything that was strange and confusing happening around me seem oddly detached. However, my parents kept knocking on the door, giving me books that tried to bring me back to reality, books about kids learning to cope with their mentally retarded siblings, as well as books such as For the Love of Ann , because that would be the closest story that was out there, for me to read. I kept trying to think of my life as a story, while they kept trying to make me read books to understand the story that I was living, that we all were living.
And yet the early books on autism, such as Clara Claiborne Park's The Siege and For the Love of Ann , did indeed follow the trajectory of our lives: the sense that something clearly wasn't right, the struggle to find an answer, the psychiatric profession as the antagonist, the incredible sense of being blamed for the fault, and trying to overcome this, and then, usually, a sense of small victories that offered hope for the future. Not for what people would define as a normal life, but a sense of connection with the child that had not been there before, a connecting with the child's spirit and an opening up into a world of possibility that had not previously existed.
Clara Claiborne Park's The Siege , one of the earliest memoirs recounting a parent's experience, first published in 1967 and still a classic, is particularly notable for its incredible attention to detail in recounting the strategies the Park family used in order to breatkthrough to Jessy, the youngest child. Clara Claiborne Park devoted her life to her autistic daughter and the family underwent great sacrifices, including uprooting and living in England so that Jessy could be a patient of Anna Freud's.
Park's memoir follows the form of a quest narrative, a journey toward an unclear destination that bears some resemblance to Victorian domestic memoirs where the memoir stresses the writer's progress, place in the individual family unit, and makes her the repository of its individual accomplishments, rather than the husband. Park's husband has a very minor role in the memoir; the basis of the story recounts Clara Claiborne Park's day with her child, the vast spectrum of notebooks that she filled with Jessy's words, her progress toward language (or lack thereof). She also devotes a considerable amount of time to accounting for her gifts in raising her three older children and the domestic well-being in which she enshrined them.
Establishing the home unit as a healthy one is important for Park, for in 1967, the mother was still viewed as the one responsible for the child's disability. Park's memoir is a strong testament against this notion. As she notes, "I set down only what is obvious, what is attested by teachers, friends, and neighbors. Our children were intelligent, responsive, and adaptable. They were also--quite irrevelevantly--beautiful, with a pink and gold beauty which seemed to belong not to the real world but to the illustrations of old-fashioned storybooks . . . It shone around them, an astonishing, almost palpable fact, as if to symbolize their less superficial successes--their intelligence and their affection" (16). Such a testimony, both from her and from the significant people in her children's lives, is important, for it is the power of domesticity, of love and enduring devotion and hope, based on the continual effort of the family to reach Jessy, that powers the narrative and the Parks' lives. As a result, the book, in its meticulous detail, is a response not only to the Parks' heroic efforts, but also to the triumph of the mother as a domestic force within the home. Women in the Victorian era embraced the domestic memoir because they valued the private sphere, invested their identity in domesticity, and celebrated their role in the home. The home, in this memoir, is the champion in the way that it often functioned in Victorian narratives: while Clara Claiborne Park yearns to teach part-time, and to have time to read and write (which she eventually does) it is the homespace that she creates, and her gifts as a mother, that are the links that serve to break through to her daughter and help her emerge as a self. When she does eventually become a full-time teacher, she is careful to note that this is not a symptom of her cold intellectualism, but part of her identity that enables her to be a happy, loving, well-functioning mother.
Memoirs about a family's struggles with autism very often are the mother's story as she cares for her child (with exceptions such as Paul Collins' Not Even Wrong ). In the Park's case, this manifests itself as a concern to assert the virtues of the mother, as opposed to the medical establishment's counterclaims at the time. The domestic memoir, as Linda Peterson notes, is primarily relational, focusing on connections with fathers and mothers, husbands and children. The emphasis in The Siege likewise falls on the woman writer's accomplishments as a model daughter, wife, and mother, and how these are interpreted and evaluated and assessed by the outside world which so often stands in judgment of her. Just as many Victorian women's memoirs were assessed according to the degree of female devotion exhibited within the text, so too Clara Claiborne Park characterizes her own role as a wife, mother, and her own temporary feelings of guilt at wanting to go back to work when she becomes pregnant with Jessy:
I had the stirrings of a vocation. My days would be my own again; I could have again the forgotten experience of being alone. I would have time to read, to bring my knowledge up to date. I could perhaps write. I could locate in a school where I could teach part-time . . . It was in this forward-looking state of mind that I learned I was pregnant for the fourth time and that the job was to be done all over again. (17)
Acknowledging her initial depression is of course important, for the prevalent theories at the time were that the mother rejected her child. Park's account stands as a clear refutation of this in the scientific, objective account she gives, that not only acknowledges the theories clearly, and shows that yes, indeed, she and her husband were intellectuals, were objective, were capable of detachment, but also goes to delineate how these very qualities labeled as pathology served, along with their great love, to bring their daughter out of her fortress.
My mother also stayed home with the children until she, too, taught part-time. But unlike Clara Claiborne Park, she did not escape the feelings of guilt as a parent, for Lawrence was her first borne, and she did not grow up with a great deal of experience with babies. My parents often stood around the crib in terror, wondering what they could do to quiet his screaming, hoping that they were doing the right thing. If a shoestring were out of place, Lawrence screamed. If his blanket was not positioned exactly the right way, Lawrence screamed. He sat and rocked in his crib, he rocked out of his crib, he howled if there were any change in his routine. At the age of three, they took him to the local doctor, who said he was simply slow. They took him to the specialist in Spencer, Iowa, who flung up his hands and said he might be retarded. The specialist at Cherokee thought he might be schizophrenic.
The specialist at the hospital in Iowa City simply didn't believe anything that my parents told them.
"Be careful," my father warned him. "if anything is out of place, he'll scream."
The specialist merely smiled coolly.
"Okay," said my father. "Pull his shoestring."
The specialist pulled the shoestring and Lawrence, placid, blonde and beautiful, shrieked.
"Okay," said the specialist, hurriedly retying the shoe. "I see you're right." But he was again diagnosed as retarded and my parents were told that Lawrence--who eventually graduated from college with a B.A. in accounting--would not make it beyond the third grade. Years later, my mother told me of her despair at the moment: sitting watching, through a glass partition, her beautiful blonde baby boy methodically stacking blocks in the intricate patterns he loved, feeling like there was nothing she could do to reach him, no way to help him, and then hearing the words that she would cling to throughout the later years: "There is more to your son then they have told," the nurse who had worked with him said.
Like my parents, this woman did not believe that Lawrence was mentally retarded. My father, not the professional psychiatrists, diagnosed him. He spent weeks plowing through the stacks in the college library, and finally came home to announce the he now knew what was wrong: Lawrence wasn't mentally retarded, he was autistic. My mother responded with joy: he's artistic, how wonderful. Imagine the slow, sinking feeling, upon realizing her mistake, knowing that now nothing would be the same. And something so quaint, so lovable, in that mistake: that of course someone with an acute artistic sensibility would be hauled off at an early age from psychiatrist to psychiatrist, to be diagnosed with a mental disability, rather than be appreciated for what he or she was: a spirit set apart, different, with a heightened vision that can tell us something of who we are. This is the tension that so many autistic memoirs increasingly explore: the question of the concept of normality and the manner in which an autistic child can make us be more careful about the manner in which we define normality. The autistic child such as my brother, such as the Parks' Jessy, does indeed suffer from profound limitations, yet those very limitations also force us to address what is missing in our own so-called normality. Although my mother's response was wrong, in another sense, of course, she was right, for the very reason that society shuns the disabled is a fear of being different, of being vulnerable, perhaps even of spirit itself.
As a college student in the late 80s, I took a class with Jane Taylor McDonald, whose oldest son, Paul, was autistic. My best friend in college, Jennifer Bonner, also had a brother who was autistic. Knowing Jennifer and studying with Jane Taylor McDonald (a sociology course on historical interpretations of women's roles as mothers) suddenly gave me a way of theorizing about my observations and experiences growing up in my family, where my mother's role as a mother was always being evaluated as somehow lacking by the psychiatrists we were seeing during Family Therapy. However, my mother, unlike Jane Taylor McDonnell, was not a highly ambitious woman struggling to balance her role as a wife, mother, and career professional. Nor was she like Clara Claiborne Park, who wanted to teach part-time and set up a household with a series of mother's helpers to enable her to do so. My mother hated having to go into the classroom and teach German. She wanted to stay home. She wanted to bake cookies. She wanted to knit sweaters, afghans, and babyblankets; in short, to be a traditional mother. Despite this desire not to be what the psychiatric profession defined as a cold female intellectual, she had already, somehow, failed, according to the family therapists we saw on a regular basis: she had failed simply because she was female.
Jane Taylor McDonnell's memoir, published in 1993, is as much a memoir about a woman struggling to fulfill herself professionally as it is about the enormous struggles she and her husband had in raising a son with autism and a daughter with cerebral palsy. While Clara Claiborne Park's memoir roots itself in the salvic power of the domestic space, McDonnell's memoir focuses on the struggle to escape what she sees as the confining world of domesticity and have both a fulfilling professional career as well as be a mother. As a result, it is as much a bildungsroman--an account of her attempt to grow as an artist and as an intellectual--as it is a quest narrative to find a way to help her son (and her daughter) create a fulfilled life for themselves.
McDonnell's memoir begins as so many others do--with the beautiful baby and the subsequent nagging doubt that something is wrong that must be discovered and solved. Her memoir, in recounting this time in the wilderness, bears a striking resemblance to the spiritual memoir, where the soul is lost and ultimately becomes whole again through the power of divine love. In the case of this family, of course, the fractured soul becomes restored through human love: Jane with her husband Jim, Paul with the promise of a college degree, and, astonishingly, a wife and child. The transference from the wilderness to salvation is ironically achieved in all these memoirs through the previously demonized figure of the mother. Like the sinful Paul, like the sinful Augstine, the demonized mother in the autistic memoir is the figure that brings others to salvation through her own suffering, subsequent enlightenment, and love.
McDonnell's memoir thus does not grapple with re-defining normal, or addressing what might be missing in our so-called normality--she is determined to view him AS normal, no matter what the cost. And the cost for her is one of profound emotional and intellectual isolation. The isolation at first comes through her own ignorance of what the condition is that makes her son so different. Like Park, like my own parents, the McDonnells had no idea what autism is, and their child is repeatedly misdiagnosed by uncaring and or willfully ignorant professionals who variously diagnose Paul as deaf or retarded. As an intellectual, McDonnell must deal with her horror at the thought of something being wrong with her son's mind: that, for her, would be the worst realization. But her conflict is compounded by her own sense of inadequacy in the academy and her desire to hide this at all costs, as well as a growing drinking problem. While on sabbaticals, for instance, her desire to finish her dissertation, work on her classes, always comes second to her husband's work and her own role as primary caretaker for Paul.
The struggle to articulate what this experience means as a woman, an academic, and as a mother is particularly agonizing for McDonnell. Her inability to tell her story is what keeps her in a near catatonic state. Ironically, Paul is as isolated in his ability to articulate his own meaning as his mother. The title of the book, News from the Border , not only refers to an old Irish legend of the child switched in the crib by the fairies, but also serves to illustrate the difference and the distance that she feels from others--she exists on the margins, and her life, and her son's life, has been relayed in dispatches. If she dared to articulate her reality, she feels intuitively she would be misunderstood or condemned. And she is condemned, repeatedly, by people who don't understand and inform her, time and again, that she is what she fears: a bad mother. While she and Jim are on sabbatical in England, the daycare center informs her that she is not disciplining her son properly; women in the grocery stare cast disapproving glances when Paul shrieks.
Her role as a professor necessitates, for Jane, weaving an elaborate illusion of a woman carefully balancing motherhood and her career. When a student interviews her on the college radio station, Jane quickly comes to the conclusion, as her other colleague in religion waxes on about how easy it is to combine work and family, that she cannot tell the truth about the life she lives. As she notes:
Lilly announced that she kept the crib in her office, that the baby slept there peacefully when she had conferences. Her two older children went to an after-school program where they painted the most marvelous pictures, or made potholders and paperweights as little gifts to present to her later
. . . I sat there, in the QWIRK radio station, my hands sweating against the microphone. What could I say? How could I say that Paul would never be happy in an regular after school program, nor would they be happy with him . . . How could I tell the listeners that Kate had been expelled from her first regular nursery school because she wasn't potty trained? The world wasn't set up for children like Paul or Kate, but sitting there in the radio station I could only think that it was my fault for not training them better, for not having more control over my children (161).
Unlike Park, McDonnell does not have the luxury of having three older, successful, well-adjusted children to point to: instead, she gives birth to another child who has a disability, a fact that initially nearly does her in. Unlike with Paul, cerebral palsy is not a condition blamed on the mother: it has a definite cause, and Kate's ability to overcome her cerebral palsy and dance in the small town ballet becomes a saving grace for Jane McDonnell, for now people point to her second child and remark what a good job she did with her.
Throughout News from the Border , McDonnell deals with the categorization outsiders fling out so easily: good mother/bad mother, categorizations easily enforced by psychiatrists such as Bruno Bettelheim, who all too easily denounced female intellectuals for the problems their children experienced. Bettelheim, in The Empty Fortress , compared the autistic to victims of torture and of war, linking the emotional trauma of concentration camp victims to those of children raised by emotionally scarred parents--particularly mothers--who could not love their children and so their children could not love. McDonnell includes a passage in News From the Border , where she reads Bettelheim in the library and is continually haunted by the image of other women reading him and taking him seriously: "this book, three copies of it, was in the library. People would read it." (136). All of these conflicting emotions highlight her feelings of fragmentation and guilt, feelings that make her, ironically, as isolated as her child.
McDonnell's memoir does not so much question what it means to be human as it challenges the inherent sexism and classism in the definition of disability and in the treatment of the disabled. As she notes, nothing she could do, nothing she could achieve, could ever make up for the fact that her child would always be treated as a second-class citizen in the world, as a result of his disability. And it is this she cannot accept, as much as she cannot accept her own role as a second class citizen as a woman in the academy. McDonnell's desire for acceptance and validation in her career become inexorably linked with the defensiveness and love she has for her child. Her love comes, however, from wanting to see Paul be like other children. She will call parents up on the phone and yell at them to play with her son, even though she realizes that she should not do this: she just cannot bear to see him not have a friend. Her desire is to make her child like other children. Likewise, she, too, seeks an experience of wholeness, just as her son struggles to find intimacy: first, with a friend, and then, later in life, with a girlfriend. Jane's isolation, both as an academic ultimately denied tenure, and a mother, combined with a growing drinking problem, also create a marital rift that is not healed until the end of the memoir, when Paul emerges as a remarkably self-sufficient adult who not only marries and has a child, but also goes to college and serves on the board of the autism foundation in the Twin Cities. The journey in the wilderness is over, and the saving grace again comes through loving sacrifice on the part of the family, but particularly on the part of the mother who, contrary to prevailing opinion, saves her child, rather than destroying him.
Like the McDonnells and the Parks, my parents refused to put Lawrence into an institution and instead responded by keeping Lawrence busy, giving him work that clearly had an established routine, something that he craved. Living in a small town, they too suffered isolation in not having the support groups many have today; but that did not stop them. As Lawrence craved routine, they found outlets for that within the community. He de-tassled corn and walked beans in the summers and throughout the year delivered newspapers. In our small town in Storm Lake, Iowa, Lawrence had the biggest paper route in the Des Moines Register's history: the papers were all promptly placed at approximately the same time on people's front steps, come rain or shine.
Living with Lawrence made us different as a family, more insular, and made it hard to live in a small town at a time when nobody really understood what autism was. Small town life can be difficult for those existing outside the norm. Lawrence was viewed as a freak, an oddity, a troublemaker. The public school system wasn't eager to take him.
But Lawrence wasn't mentally retarded, and so my parents fought to get him into class. This was before the days of handicap accessible classrooms. The teachers eyed him warily, trying to ignore him as best he could. Lawrence was like a space alien, sitting with his square sixties glasses, twirling his pen in the middle of class, and laughing oddly while solving math problems. There was no telling what triggered his odd responses, quirks, and tics: someone may have looked at him funny, a sound may have frightened him. He often developed strange obsessions and as he grew older, he sat in his room and cut articles out of the paper about shooting and crimes committed in the community and sometimes my mother and father would lie awake at night and wonder what provoked this fascination, whether he would grow up to be one of these people you read about in the newspaper who suddenly snapped and tipped in the other direction.
For me, the hardest moments were not defending him at school against the tauntings and the jeers, or even the nights around the family dinner table when he would try and hurt himself. The hardest times were the family therapy sessions. I was eight when we started going to Cherokee, and I remember clutching my mother's hand very, very tightly as we walked up the sidewalk into the brown brick building with the bars on the windows. I remember hearing screaming coming down the foul-smelling corridors, the squeaking of rubber-soled shoes, smelling the strong institutional stink, and squinting in the harsh fluorescent lights. I remember hating the psychiatrist as he sat there with his clipboard, asking me who I loved more, my mother or my father, asking me to walk over and sit beside my favorite parent. I knew that he was out to get my mother, to prove that she was responsible for Lawrence's condition. I knew nothing of Kanner and his theories. I didn't really understand what was wrong, but I could sense his feelings toward my mother. I don't remember how I knew, but I hated him, and I refused to say anything. My mother left the sessions with her eyes dim and red-rimmed and I held her hand even tighter.
Years later, after the Freedom of Information Act was passed, Lawrence wrote and requested his files from Cherokee and read the doctor's report. When Lawrence announced that he had requested those records and read them I saw my mother's face blanch. She knew what was in them; she knew what he would have read. But he patted her on the shoulder and said in his big, booming, awkward way, "I know it's not your fault, mom, they said it was your fault, but I know it wasn't your fault." And her eyes filled with tears.
When I think of the burden of having to live with that sense of guilt, year after year, as the one who damaged your child, I feel tremendous anger. Over the years, the psychiatric profession has not only harmed the mentally disabled by locking them up, filling them with drugs that strip them of their humanity, but they have looked to blame the families. Granted, Kanner's theory has been discredited, but the damage remains in the hundreds of women who must live with the knowledge that they might be responsible.
Ironically, autism does occur in first-born boys more than in girls, and autistic children appear more likely to be the children of academics and other highly educated people than any other group. However, it has yet to be proven whether this is simply due to the fact that highly educated professional are more likely to seek out the specialists who can diagnose them more accurately. Today, it seems quite clear that the only thing we know for sure is that we do not yet know what causes autism and that it equally affects all races, classes, nationalities. Movie like Rain Main , and books such as Temple Grandin's Thinking in Pictures and Oliver Sacks' essay on Grandin, "An Anthropologist on Mars," as well as the recently published novel, The Curious Incident of the Dog in the Night Time , written from the perspective of an autistic boy, have done a great service in helping people understand what autism is and what autism is not. Star Trek 's Data, who thinks logically and does not understand what emotions are, is a character many autistic people relate to, and has also helped the public identity with autistic traits and think less fearfully about autistic people.
Lawrence loves Star Trek . He has seen every Star Trek movie and has all the books and every Christmas he buys my mother (also a Star Trek fan) a Star Trek movie and they sit together and watch it, Lawrence rubbing his nose, something he always does when he feels happy. When he came to visit me when I lived in Nebraska, I took him country-western dancing, and he moved around the floor, somewhat stiff and labored, his sneakers squeaking loudly, but a huge grin splitting his face, for he was doing what other people, normal people do. He was, ironically, more willing to dance then the shy cowboys with their hats pulled down over their faces, standing with their backs against the wall.
More recent memoirs take the tack of the spiritual autobiography: where they hinge on discovery of what it means to be human through the writing process itself. The forefather of spiritual autobiography, St. Augustine took his Confessions as an opportunity to detail both the best and the worst about himself, and the narrative focuses on the turning points that finally lead him toward his religious vocation. A man who once prayed, "Give me chastity and continence, but not yet," Augustine struggles with his bodily desires throughout the book, and gradually finds himself in a small garden, consumed with doubt and indecision. And then, seeming from nowhere, he hears the voice of children chanting: "Take up and read. Take up and read." He picks up the Bible, opens it at random, and of course the passage strikes him to the core. He dedicates his life to God from that point on. His life is inseparable from his faith, much as the act of writing the story becomes, both for the family of the autistic child as well as the autistic person him/herself, an act of salvation, an ability to understand and transform experience, a way to heal.
In a similar manner, we have come to see autistic persons writing their own memoirs. The last chapter of Jane Taylor McDonnell's memoir is written by her son Paul. Donna Williams' Nobody Nowhere and Somebody Somewhere , as well as Temple Grandin's memoir, Thinking in Pictures , can be seen as characteristic of spiritual autobiography: "spiritual autobiography demanded an intense introspection and retrospection of the writer's life and a rigorous interpretation of his experience in terms of Biblical texts or patterns of biblical history." While Donna Williams' memoir of course is not saturated with Biblical texts, the experience of being converted is a strong subtext in the memoir: she moves from a place of intense inwardness to a reaching out into the world, a process that, to her, has a salvic quality. It reads as a pilgrimage towards wholeness, a borrowing of the "mythic quest-plot" from Bunyan's Pilgrim's Progress and more generally from religious autobiography in an attempt to understand what it means to be human. In this secular text, the protagonist (Williams) struggles from the imprisonment of her childhood as an autistic girl towards the almost unthinkable goal of living, working, and loving as a mature young woman who discovers, ironically, that she has a body, that she is capable of feeling pain. Her salvation is the discovery of the senses, rather than flight away from them. The final confession of faith, central to the spiritual autobiography, comes in her befriending of another young autistic man and her ability to learn what it is to feel emotion and to be grounded in the physical self.
Like the mystic, like the religious neophyte, she seeks integration of self, unity through pain. When Donna Williams wants to reassure herself of her own existence, she hurts HERSELF. One night, for example, fearing another battering from "Garry," a man she lives with, she sits up, afraid to sleep, afraid of the dark. "The darkness in my soul, however, was the greatest, and I sat there staring vacantly into space, tearing my arm up with a nail I found" (88). When other people get too close, invade her space, the experience is so overwhelming that she can go into what she calls a state of "total shutdown." And what/where is that state? "It feels like death," she tells an interviewer: all her faculties close down and she feels "buried alive," loses all sense of self, identity, body, connection, reminiscent of the mystic's experience of the Dark Night of the Soul, an annihilation of the self that, once successfully journeyed through, becomes a path toward re-integration of the self.
In the seventies, when Lawrence was a teenager, my father and mother took us to Germany to visit my aunts, uncle, and cousins. Lawrence loved reading about Hitler and asked in his obsessive way everyone he met what he or she thought of the Fuhrer. It was one thing to do this in Storm Lake, but quite another in Germany. My father said: don't ask the Germans about Hitler. Lawrence said, No, sir, I won't ask anyone about Hitler. When we got on the German tour bus, Lawrence sat next to an elderly German man behind my father and promptly asked him, "So what do you think about Hitler?"
Now that I am older, there seems something almost fitting about this story. Lawrence knows love and joy and defiance, those very qualities that make us human. On that same tour, he grinned and took a tiny step, putting his foot on Czech soil, despite the huge towers across the border with the men with their rifles standing on patrol, ready to shoot anyone who crossed over.
Lawrence is not a person behind bars. He is someone willing to step on the dangerous soil, to ask the difficult question, to try to dance, and his life, and the memoirs of that recount lives like his, all ask us to do the same.
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