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Autism and Representation
Case Western Reserve Univ
Cleveland, Ohio
28-30 October 2005



Sheryl Stevenson
The University of Akron
Do not cite without permission of author.

"From 'Refrigerator Mothers' to 'Mommie Wyrdest' : Autism's Refiguring of Maternal Roles"

This paper was sparked by a moment in a reading group's discussion of The Curious Incident of the Dog in the Night-Time .     Focusing on differences between the parents of Mark Haddon's adolescent narrator, members of the group expressed admiration for the father's ability to deal with his son's autism by setting aside his own demands, ranging from the parent's profound need for expressions of love to more mundane matters such as wanting to foster normal eating habits.   Christopher Boone's mother, in contrast, was blamed for failing to relinquish her own needs.   It appeared to the group that she has great difficulty adjusting to a child who cannot provide the emotional relationship associated with the mother-child bond, even as he also frustrates her mothering through his resistance to numerous foods and common bonding activities.   I was intrigued because these fictive parents' responses diverged along lines that could be predicted by our culture's gender-role expectations: the woman emotionally exhausted by trying to be the traditional "good mother," the man comfortable with emotional distance and eccentric domestic arrangements.   (Imagine a house that hasn't been "hoovered" in two years, even if it does satisfy the child's demand that furniture not be moved!)

A wealth of material outside Haddon's novel confirms the idea that he portrays gendered responses of parents dealing with a child's autism.   For example, research studies have found particularly high levels of stress among mothers of autistic children, as well as higher rates of depression for mothers than for fathers of such children (Eisenhower et al.; Little; Gray).   Mothers' experiences also figure largely in the outpouring of autobiographical essays, memoirs, advice books, documentaries, and literature for children that contribute to the contemporary cultural construction of autism.   Seen in light of this vibrant culture, and through feminist research on both motherhood and disability, Haddon's bestseller invites readers to try to trace, within a boy-detective's murder-mystery novel, the story of a muted, or even "murdered," mother.   Indeed, this effort to find the woman's nearly suppressed story is represented within the novel, in the scene where Christopher discovers and reads his mother's hidden letters, though he of course cannot understand their significance for her.   Looking beyond Haddon's ironically misunderstood maternal figure--a portrait of ill-guided, thwarted, traditional mothering--I would like to compare representations of motherhood in relation to autism, focusing on two mothers' memoirs: Clara Claiborne Park's The Siege , her sequel, Exiting Nirvana , and Jane Taylor McDonnell's News from the Border .   My reading of these texts suggests that autism challenges dominant conceptions of motherhood while also multiplying the contradictions women experience in socially defined maternal roles.  

In The Cultural Contradictions of Motherhood , sociologist Sharon Hays lays out contradictions arising from the contemporary, socially constructed "ideology of intensive mothering " (x).   Reinforcing assumptions that the mother is "the central caregiver," this ideology also defines appropriate child rearing as " child-centered , expert-guided , emotionally absorbing , labor-intensive , and financially expensive " (x, 8).   Such assumptions, especially for mothers who work outside the home, tend to come into conflict with dominant Western values that favor "the efficient, impersonal, competitive pursuit of self-interested gain" (Hays 10).   Since Hays does not explore how a mother's or child's disability might contribute to these conflicting pulls between self-sacrifice and self-interest, it is useful to consider Barbara Hillyer's views on this issue.   Her book Feminism and Disability argues that demands posed by a disability highlight the often unquestioned primacy given to productivity; "society's labeling of disabled people as incompetent or unproductive," she says, "makes conformity to the ethic of productivity almost a prerequisite to self-esteem for them" (68).   According to Hillyer, the mother of a disabled child faces similar pressures to attain the status of a "superwoman" who is, simultaneously, a figure of supreme self-sacrifice (52-53).   Such parents, she says, "are expected to increase their productivity by providing educational and rehabilitative services, medical therapies, and so on in addition to their own normal work loads" (69).   When mothers use autobiographical representation to portray how their families' lives are affected by autism, their texts offer crucial insights into ways women cope not only with a disability but with multiplied pressures stemming from contradictory expectations concerning a mother's appropriate roles.    

A primary contradiction arises from the mothers' acts of representing their children whose autism impedes their own, autonomous self-representation.   Given the prevailing cultural association of females with strengths in empathy and relationships, the mother's role as communicator, both with and for her child, is often assumed.   For example, Sharon Hays shows the prevalence of this assumption in the most popular child-rearing manuals, those of Spock, Brazelton, and Leach (55-59).   Yet contradictory social prescriptions frequently cast guilt and suspicion on the "oversolicitous or overprotective mother," as Molly Ladd-Taylor and Lauri Umansky note (13).   For the mother of a child with autism, a disorder that profoundly affects communicative abilities, telling the child's story may seem to involve a questionable projection of her own views that would create only an illusion of communication.   The tension between facilitating and usurping the child's discourse recalls the early 1990s debate over "facilitative communication," brought to the general public's attention through the 1993 Frontline documentary "Prisoners of Silence."

As though sensitive to a charge of eclipsing an autistic child's efforts to communicate, both Park and McDonnell find ways to include their children's discourse and modes of self-representation.   For example, McDonnell's book, subtitled A Mother's Memoir of Her Autistic Son , concludes with a fifty-page afterword by her son Paul in which he re-presents his life story.   Park's subtitle for Exiting Nirvana -- A Daughter's Life with Autism --notably shifts emphasis from the mother's story, a shift consistent with her more frequent and pervasive strategies of incorporation, such as her use of Jessy's phrases, in quotation marks, for most of the book's chapter titles.   Park's memoirs also incorporate facsimiles of her daughter's artwork, along with handwritten items such as journal writings and Jessy's own descriptions of her paintings.   A contrasting, and more extreme, effort by a mother to give her child a voice can be found in Karen L. Simmons's "Little Rainman": Autism--Through the Eyes of a Child .   Written in the format of a children's book, this text offers the story of Simmons's son in "his" first-person perspective: "My name is Jonathan.   I have autism (aw-tis-um)" (9).   Simmons claims in her preface that Jonathan is " indirectly " the book's author, for as she says, "I felt like I was literally inside of his head and writing what he truly feels"; "I know this is how he felt at the time as any mother knows her own child" (2, 3).   McDonnell's narrative rarely suggests such certainty concerning maternal knowledge of her autistic child, and though Park seeks to explain aspects of how Jessy thinks, her narrative distinctly sets off her child's verbal and pictorial self-representation.   Undermining any comforting impression of maternal understanding, one chapter of Exiting Nirvana delves into Jessy's creation of "books"--"hundreds of them"--reflecting her many obsessions (97).   In the same chapter, Park repeats the words "strange" or "strangeness" with striking frequency, to convey "the strangeness of that busy mind," an uncanny "strangeness that infused our family's every day" (97; cf. 115).

This Jessy embodies the pure, eerie otherness of cognitive difference.   Michael Bérubé suggests that such figures "haunt narrative" precisely because they draw attention to "a form of human embodiment that cannot narrate itself but can only be narrated" (572).   Park's "Epilogue" in The Siege captures a terrific image of this human condition, when she depicts Jessy as the uncomprehending typist for the book's Spanish translation (280-81).   Commenting on her choice to call her daughter "Elly" in her memoir's first edition, Park says, "Fifteen years ago I gave her that name, in case--could I actually have thought it?--she would someday read this book and be embarrassed.   I need not have worried.   Jessy likes coming across her book name.   She likes coming across an extra space between paragraphs, too, or unusual punctuation" ( The Siege 281).   Jessy's relationship to "her" story reveals her deviation from norms of self-awareness that would seem to be necessary to self-representation.

As Bérubé puts this idea in his March 2005 PMLA article "Disability and Narrative," numerous depictions of cognitive difference in fiction and film provoke recognition of the "[m]indedness" that seems to be "a necessary condition for self-representation and narration" (572).   Many texts, like the mothers' memoirs I am highlighting, attempt to incorporate perspectives shaped by cognitive disability; Bérubé, for example, contrasts depictions of short-term memory loss in Memento , Fifty First Dates , and Finding Nemo .   He finds in this trend an impulse toward the "democratization of narrative representation"--an effort of empathy and inclusivity that will give a voice to those "who cannot represent themselves" due to their neurological difference (575, 572).   Yet when narratives by mothers include their autistic children's autobiographical writings or artwork, these of forms of self-expression reveal how the gender role of Mother-the Communicator places a pressure on women that is exacerbated by autism.   For even as these mothers try to allow the child's voice and story to emerge, their texts clarify the gulfs that separate mother and child, and ultimately reader and child, precluding mutual understanding.   This situation is encapsulated in Park's image of the way Jessy "still flips through books . . . , looking for spaces, or irregular quotation marks, or the longest sentence she can find" ( The Siege 281).

Another contradiction arising from the mother's gendered role as communicator is that the condition that impedes the child's self-representation gives the woman a voice and an audience.   Autism refigures the mother's traditional role as protector of her children, intensifying the demands for a parent (and typically this will be the mother) to take on roles of mediation and advocacy for the child with special medical and educational needs.   As the older brother of a young man with autism comments in the documentary Refrigerator Mothers , "My brother needs a protector, and I think that my mother feels like she's his protector in this life."   Mothers of autistic children have also taken on public roles of communication and advocacy.   In recent years, the so-called "Mercury Moms" have prominently played such a role in their highly publicized campaign for research and government action to address the connection between sharply increasing rates of autism and thimerosal, a form of mercury, in common vaccines for children.   Yet this role can also be seen in Jane Taylor McDonnell's 1990s feminist essays, in which she uses her autobiographical experience to target contemporary professionals who hold to outdated theories that autism is psychogenic, caused by cold or obsessive "refrigerator mothers" (for example, see McDonnell's "On Being the 'Bad' Mother of an Autistic Child").   Both McDonnell and Park, as academic women, follow a path described by Celest Martin, who writes of facing her own need to connect her academic work (in university teaching, research, and writing) with her work, including research, as the mother of an autistic son.   But if an academic woman recognizes, as Martin says, that her child "provided the subject matter for [her] writing" (168), she may face the question, how can a mother play the role of communicator or advocate without drawing attention to the "crippled" or "damaged" child?

This question is one of the appropriate rhetorical stance for the mother-writer who wishes to portray, but not betray, her autistic child.   Rosemarie Garland-Thomson outlines several possible stances by categorizing "visual rhetorics" in photography that represents people with disabilities.   The memoirs of Park and McDonnell avoid any taint of the "exotic" rhetoric that "presents disabled figures as alien, often sensationalized, eroticized, or entertaining in their difference" (Garland-Thomson 343).   But in a chapter each calls "The Changeling," each mother conveys the uncanny sense of her child's difference by describing Irish folklore of the "fairy child left behind in the cradle when the real child is stolen away" (McDonnell 54; cf. 325-26, and Park, The Siege 5-6, 12).   Aside from Jessy's "strangenesses"--her obsessions, compulsions, and amazing feats of memory--it is a child-like, ageless quality that impresses her mother as peculiarly belonging to the Irish fairyland, "the Land of Youth" ( The Siege 5).   It is for this quality that "people love her," Park says near the end of Exiting Nirvana --"for her otherworldliness, her simplicity, her utter incapacity for manipulation or malice" (204).   With Garland-Thomson's taxonomy, we can see such representations as fitting the "wondrous" mode, which leads the audience to view "the disabled figure as the exception to human capability rather than the rule" (341).   Since Jessy's autistic behaviors, as well as her mathematical and artistic gifts, are more pronounced than Paul's, it is not surprising that Park's memoirs draw on this rhetoric of defamiliarizing wonder much more pervasively than does McDonnell's News from the Border .

However, both mothers try to balance the impression of wondering estrangement with the realistic mode that, according to Garland-Thomson, "minimizes distance and difference," encouraging the audience's identification with the disabled person (344).   Park thus fills her final chapters of Exiting Nirvana with anecdotes that present the "unromanticizable" ordinariness that she sees as a major achievement of her adult daughter's life (202), just as McDonnell also concludes her memoir with incidents that convey the typical, late-teenage aspects of Paul's day-to-day living, with friends dropping by, part-time work, and community college courses.   Capturing "an increasing, precious ordinariness"--Park's words in the final sentence of Exiting Nirvana (208)--this combination of rhetorics, juxtaposing the strange with the everyday, claims the ordinary world for the person with autism

Garland-Thomson's fourth category, the "sentimental" rhetoric that portrays "the sympathetic victim" (341), clarifies why both mothers only sparingly elicit pity for their children's pain.   Yet it is in their portrayal of suffering that the two memoir writers differ decisively, in that McDonnell bares much more of her own grief, depression, and distress, making her memoir overall seem more sentimental and more realistic than Park's beautifully written texts, with their more artful structure, measured style, and self-effacing narration (characteristically Park uses second-person plural pronouns, even in an odd chapter title, "Ourselves").   Despite the great beauty and insight of Park's more conceptual and inspiring family portraits, readers can also see the value of McDonnell's warts-and-all revelation of a mother's pain and confusion.   And since McDonnell's text, a "Mother's Memoir," attempts to evoke a life not wholly defined by her autistic child, she thereby grants him the same separate life, so that he escapes from her story's view in many sections.   Park instead portrays a mother's life absorbed in besieging the citadel of her daughter's autism, while also keeping extensive records to document her observations. As Sacks notes in his foreword to Exiting Nirvana , this commitment to detailed, daily documentation has produced, perhaps, "more 'data' on Jessy . . . than on any other autistic human being who has ever lived" (x).   (Sacks does not question the assumed value of this total-immersion ethnography, carried out over more than three decades.)   In contrast, McDonnell conveys her repeated awareness of pressures to devote her whole life to her son, but she has another child and a husband, both with their own problems, who also absorb her attention, along with her teaching and research--work that does not focus on Paul or issues of autism.   In this way, News from the Border resists autism's pressures on mothers to adopt an intensified version of "intensive mothering."     McDonnell's practice of motherhood, allowing some autonomy for both herself and her son, resembles Barbara Hillyer's view that mothers of children with disabilities need to beware of maternal codependency, seeking instead a stance of mutual "interdependence" that recognizes the mother's needs for sources of fulfillment outside the mother-child relationship (216-17).

Autobiographical essays by mothers with autism also describe a form of motherhood that allows for autonomy and emotional separation.   Particularly fascinating perspectives on mothering appear in a collection edited by Jean Kearns Miller, Women from Another Planet?: Our Lives in the Universe of Autism .   Gathered under the heading "Madonna at Variance," in essays like "Mother at Odds" and "Mommie Wyrdest," autistic women repeatedly present their longtime perception that they could not fit the dominant norms defining motherhood in terms of sensitive, emotional involvement and extensive social networking.   Yet these writers use their autobiographical experience to defend a less emotional (and less emotionally demanding) form of mothering, which they see not only as highly suited to their autistic children, but also as developing the strengths of their children who fit cognitive norms.   In these essays, readers can glimpse the nontraditional mothering that Mark Haddon's Christopher requires.   This use of autobiography clearly brings into question what one autistic mother calls "the cultural belief in a socially sentimental and intuitive form of loving as the single, legitimate source of parenting," excluding more rational forms that preserve clear boundaries (Miller 195).

  Autobiographical constructions of the mother-child relationship by mothers dealing with autism--their own or their child's--show the need for an expanded conception of motherhood, one that accommodates neurological difference.   As autism itself demands a rethinking of possible maternal roles, these texts also highlight the multiplication of cultural contradictions faced by women whose experiences of the mother-child relationship must of necessity conflict with hallowed (and contested) maternal stereotypes.   Rather than underscoring the impairment of lives, families, and mothers themselves, these texts construct autism spectrum disorders as granting opportunities for understanding and accepting differences, even in the most fundamental and socially defined relationships.

Works Cited

Bérubé, Michael.   "Disability and Narrative."   PMLA 120 (2005): 568-76.

Eisenhower, A. S., B. L. Baker, and J. Blacher.   "Preschool Children with Intellectual Disability: Syndrome Specificity, Behavior Problems, and Maternal Well-Being."   Journal of Intellectual Disability Research 49 (2005): 657-71.

Garland-Thomson, Rosemarie.   "Seeing the Disabled: Visual Rhetorics of Disability in Popular Photography."   The New Disability History: American Perspectives .   Ed. Paul K. Longmore and Lauri Umansky.   New York: New York University Press, 2001.   335-74.

Gray, David E.   "Gender and Coping: The Parents of Children with High Functioning Autism."   Social Science & Medicine 56 (2003): 631-42.

Haddon, Mark.   The Curious Incident of the Dog in the Night-Time .   New York: Doubleday, 2003.

Hays, Sharon.   The Cultural Contradictions of Motherhood .   New Haven: Yale University Press, 1996.

Hillyer, Barbara.   Feminism and Disability .   Norman: University of Oklahoma Press, 1993.

Ladd-Taylor, Molly, and Lauri Umansky.   Introduction.   "Bad" Mothers: The Politics of Blame in Twentieth-Century America .   New York: New York University Press, 1998.   1-28.

Little, Liza.   "Differences in Stress and Coping for Mothers and Fathers of Children with Asperger's Syndrome and Nonverbal Learning Disorders."   Pediatric Nursing 28 (2002): 565-70.

Martin, Celest.   "Silver Linings: Forging a Link between Mothering a Child with Autism and Teaching/Scholarship."   The Family Track: Keeping Your Faculties while You Mentor, Nurture, Teach, and Serve .   Ed. Constance Coiner and Diana Hume George.   Urbana: University of Illinois Press, 1998.   167-72.

McDonnell, Jane Taylor.   News from the Border: A Mother's Memoir of Her Autistic Son .   New York: Ticknor & Fields, 1993.

---.   "On Being the 'Bad' Mother of an Autistic Child." Ladd-Taylor and Umansky 220-29.

Miller, Jean Kearns.   "Mommie Wyrdest."   Miller 191-95.

---, ed.   Women from Another Planet?: Our Lives in the Universe of Autism .   Bloomington: AuthorHouse, 2003.

Park, Clara Claiborne.   Exiting Nirvana: A Daughter's Life with Autism .   Boston: Little, Brown, 2001.

---.   The Siege: A Family's Journey into the World of an Autistic Child .   1967, 1972, 1982.   Boston: Little, Brown, 1995.

"Prisoners of Silence."   Frontline (19 Oct. 1993).   Dir. Jon Palfreman.   Washington, DC: PBS Videos, 1993.

Refrigerator Mothers .   Dir. David E. Simpson.   Fanlight Productions, 2002.

Sacks, Oliver.   Foreword.   Park, Exiting Nirvana ix-xiv.

Simmons, Karen L.   "Little Rainman": Autism--Through the Eyes of a Child .   Arlington, TX: Future Horizons, 1996.    





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