Mitzi Waltz Autism Research Unit/School of Arts Design Media & Culture University of Sunderland

READING CASE STUDIES OF PEOPLEWITH AUTISTIC SPECTRUM DISORDERSA CULTURAL AND MEDIA STUDIES APPROACH TO ISSUES OF DISABILITY REPRESENTATION Mitzi Waltz Autism Research Unit/School of Arts Design Media & Culture University of Sunderland

Case studies and autistic spectrum disorders Historically, autistic spectrum disorders (ASDs) have been described, defined, and differentiated from other neurological conditions primarily on the basis of case studies. Although much empirical data about people with ASDs as a population exists, its accuracy and applicability to individuals is suspect. This has given case studies additional importance.

Reading case studies There is a huge literature on medical case studies, including historical studies on form, content, and use; examinations of issues of representation and power in case studies; and critical re-examination of “facts” presented in case studies, particularly in psychology. The examination of case studies as texts can enrich existing ways of looking at these documents, not supplant or supercede them.

Reading case studies Reading medical case studies as texts has gained a prominent place within cultural and media studies research in recent years, following much examination in the field of medical sociology. These fields offer tools for situating texts within their cultural and historical contexts, examining how texts are produced and consumed, and examining their socio-political effects. In the case of medical case studies, this includes their impact on health and disability ideologies, policies, and practices.

Reading case studies: The disability studies approach As disability studies practitioners, we naturally look for how case studies discuss (or do not discuss) issues of impairment and issues of social construction. We acknowledge that the presentation of “medical facts” is not a value-free exercise, and watch for what Rosemarie Garland Thomson calls “enfreakment” in portrayals of people with disabilities. We look specifically for how the voices and views of people with disabilities are heard, or not heard, when disability and the lives of people with disabilities are written about.

Reading case studies: The medical sociology approach Medical sociologist Renee Anspach (1988) has identified four major features of case presentation: The separation of biological processes from the person (de-personalization) Omission of the agent (e.g., use of passive voice) Treating medical technology as the agent Account markers, such as “states” and “denies,” that emphasise the subjectivity of patient accounts Medical sociologists have also examined how medical records are written, and used discourse analysis to examine how assumptions and power relationships are evidenced within them. These observations can help us frame our own examinations of case studies.

Reading case studies: Media and cultural studies tools (part 1) In media and cultural studies, we closely examine texts as cultural artefacts. Tools borrowed from these fields can also be useful. They include: • Content analysis: usually quantitative analysis of words, images, etc. • Ideological analysis: examination of power relations and cultural assumptions encoded within texts • Discourse analysis: critical examination of how texts are produced and used, and of the use of structure, organisation, grammar, etc. within texts (linguistics) • Rhetorical analysis: Examining the use of persuasive techniques in texts

Reading case studies: Media and cultural studies tools (part 2) • Narratology: Examining how narratives are created and how they create representations; looking at disability as “storied” • Genre theory: Looking at groups of similar texts and examining how genre conventions affect the group • Intertextuality: Examining how texts relate to each other (including how written texts relate to visual texts, such as images or film), and to culturally placed readers NOTE: Discourse analysis and rhetorical analysis are also employed by medical sociologists.

Applying these tools to case studies of people with ASDs For this project, I decided to apply some of these tools to examining a series of well-known case studies that have had a great deal of impact on autism research. I wanted to see whether using these tools could tease out some information about how these texts (and, by extension, their authors) gained power in medical debates about ASDs, how they held on to this power despite the emergence of contradictory evidence, and how these case studies relate to each other within the genre of case studies about ASDs. I also wanted to look at representations, ideologies, and discourse in these case studies, and how these factors relate to and correlate with first-person accounts by people with ASDs.

Case studies of people with ASDs I decided to work from a list of well-known and frequently referenced case studies. Taken together, these help to form the basis of a “core narrative” about autism. This list included: • Cases from “Autistic Disturbances of Affective Contact,” Leo Kanner, 1943 • Melanie Klein (Dick/Richard), 1945 and 1961 • Dibs In Search of Self, Virginia Axline, 1964 • “Joey the Mechanical Boy,” Bruno Bettelheim, 1967

Case studies of people with ASDs I also decided to include a set of 19th century cases that I have been working with. Because these were written before autism was named and defined, I felt they might offer a useful contrast. NOTE: I promised to look at a case by Margaret Baumer in my abstract, but have not completed that part of the work in time for this presentation.

Personal “case studies” by people with ASDs • I decided to compare and contrast these with a small set of • narratives by people with ASDs, including: • Jim Sinclair, “Bridging the Gaps: An Inside-Out View of Autism,” 1989 • Tim Nickson, “Autism Experience, 1978-1992,” 1998 • I deliberately chose to use two narratives by males with ASDs. • I find it interesting that although males with ASDs outnumber • females by at least 3 to 1, almost all of the best known personal • narratives by people with ASDs are by women. Sinclair’s account is • chronologically congruent with the medical and parent accounts, • while Nickson is about a decade younger.

Parent-written “case studies” • I also looked at two book-length “case studies” by parents of • children with autism: • The Siege by Clara Claiborne Park, 1967 • The Small Outsider by Joan Martin Hundley, 1971 • These are part of an extraordinarily large genre, encompassing • perhaps the greatest number of parent accounts of a child’s health • condition. I chose the Park and Hundley accounts because they were • very influential (particularly in the US and Australia, respectively), and • because they overlap in time with the medical accounts chosen.

Medical case studies: Dickinson Before I look at the “big names” in autism research, I will discuss three case studies that I collected from the archives of Great Ormond Street Hospital. These date from 1872-1877, and were written or dictated by William Howship Dickinson, who volunteered to assist with child neurology cases at the hospital. In each of these case studies, symptoms are described that are consistent with modern DSM-IV criteria for autistic disorder. Dickinson diagnosed two cases as “dementia,” the third as epilepsy.

Medical case studies: Dickinson Dickinson’s work was intended for use solely by himself and his colleagues, so no attempt was made to avoid or explain medical terms, or to build a cohesive literary narrative. It is evident from the material that Dickinson used a semi-systematised data collection method, starting with basic patient details and branching out to family and patient medical history collected from parents. The bulk of his case studies is made up of direct observational data, some of it his own, some obtained by questioning nurses. As none of the children were verbal, no first-person testimony is included.

Medical case studies: Dickinson The words of carers (parents and nurses) are unattributed, and their contributions to the data are not qualified with the use of subjective modifiers. The observations range from telegraphic (“Chest ricketty”) to highly descriptive (“Cannot speak, but if moved in bed contrary to her wises, or if anything is done that she does not like, she makes a half-screeching noise.”) Dickinson seems to be focused on the patients’ bodies, with descriptions of physical characteristics, movements, bowel habits, sleep habits, and seizures given more attention than purely emotional, behavioural, or intellectual descriptions. Although his notes indicate he believes the symptoms he sees have an organic origin, he offers no prognosis. In only one case does he attempt medical treatment, giving bromides, mercury chloride, senna, and cod liver oil to treat the third child’s seizures. She is discharged with both medical and behavioural improvements noted.

Medical case studies: Kanner Leo Kanner’s case studies follow the typical pattern used by most medical doctors in his era, as through notes entered on a standard form have later been pieced together into narrative form. These case studies have been prepared for publication in a medical journal, so some specialist language is used. However, as the field of child psychiatry was still fairly new in 1943, some terms and concepts are explained. Each case begins with a paragraph stating the child’s name, age at first clinic visit, and the reason for this initial admission. This reason is variously presented as a direct quote from a parent, as a quote or paraphrase of the reason given by a referring professional, or as a simple description of symptoms that may be Kanner’s observations or perhaps a summary of case notes received.

Medical case studies: Kanner This basic material is followed by a life history narrative, generally including birth and illness history, developmental milestones (age at lifting head, crawling, walking, speaking, etc.), and comments about the child’s development and behaviour from parents or other observers. Kanner indicates that at least some of this descriptive material came from written personal accounts given to him by the parents. Each account also includes a description of the child’s parents, including educational background and professional attainment, and several include notes about unusual or notable relatives. Some quotes from the children are included, but primarily to illustrate their idiosyncratic use of language. Kanner’s own voice is rarely heard in these descriptions, although those of other first-person observers, such as parents, are presented as quotes or in paraphrased segments of text. Kanner’s own material is presented in third person, and the language is relatively dispassionate aside of the use of words such as “remarkably” and “skilfully” in connection with feats of memory or other accomplishments.

Medical case studies: Kanner Kanner recounts and summarises far more data on the children's families (sometimes going back as far as two generations) than on test results or physiognomy. Family descriptions tend to focus on unusual characteristics (“psychoneurotic, very brilliant, given to hysterics”), but are presented as quotations, perhaps derived from a written parent questionnaire. When present, material from other medical professionals’ reports is not presented in quotations. Physical clues, such as large head size, are noted briefly without further comment. Kanner’s final comments are addressed to fellow professionals, referred to as “we.” These observations readily show where his suspicions—and therefore his assumptions—lay. In this conclusion, Kanner does not attribute psychological significance to the children's unusual speech patterns, such as pronoun reversal and echolalia. Although he does observe that many of the parents are unusually intelligent, obsessive, and “cold,” he does not suggest a causal relationship between parental behaviour and autism. Instead, he hypothesises that autism may result from an inborn brain difference, and suggests further study.

Medical case studies: Kanner Kanner does not offer a definite prognosis, although he indicates that the children from his initial study group have continued to develop, and that he is cautiously optimistic.

Medical case studies: Klein Psychoanalyst Melanie Klein wrote more than one account of her four-month treatment of the child she calls “Richard” or “Dick,” but the best-known version is presented in her book Narrative of a Child Analysis: The Conduct of Psycho-Analysis of Children as Seen in the Treatment of a Ten-Year-Old Boy (1961.) It presents her notes on 93 therapy sessions, and is described by the author as a “case-history.” It is written in first person and follows the Freudian model, in which the analyst’s observations are presented alongside purported direct quotes from the patient, digressions into personal and family history, and theoretical concepts. The book-length version also incorporates several of Richard’s drawings of submarines, bombers, people, and shapes. Klein’s sessions with Richard took place in 1941, before the term “autism” was applied to children. Klein did not offer a solid diagnosis at the time (although she referred to Richard in later years as “autistic,”) instead using a variety of pejorative terms such as “anxious,” “schizoid,” “paranoid,” “manic,” “worried,” and “depressed.”

Medical case studies: Klein Although Klein’s account of Richard’s analysis is filled with words that purport to be his quotes, it is notable that she rarely seems to listen to what he actually has to say, nor does she attempt to understand his personal system of symbols. People with autism often note that they may develop highly idiosyncratic symbolic systems, in which words or objects have specific personal meanings. Although Richard sometimes offers information to his analyst about such meanings, Klein instead applies a typical Freudian symbolic system—even though she acknowledges that she has to teach the child what he is supposedly saying symbolically, including explaining what “sexual intercourse” and “genitals” are. Far more space is given to Klein’s “interpretations” and notes than to Richard’s actual words. Although the analyst questions the veracity and meaning of nearly everything the child says, she rarely expresses any uncertainty as to her own observations.

A typical example of the text: Richard got up; he dusted the room, stamped hard on the little stools, kicked a ball about, which had to be taken out of a cupboard, saying he did not want it to be there. He shut the cupboard door, saying that he did not want the ball to jump into the cupboard; it might get lost in there and he would not be able to get it out again. Then he threw another ball at the first one and said that they were ‘having fun.’ Mrs K. interpreted that Richard had shown that he wanted to take the father’s genital, represented by the ball, out of Mrs. K. and Mummy (the cupboard) and to play with it himself. This was expressed by the two balls ‘having fun’; he had used the same expression for what he was doing secretly with [his dog] Bobby in his bed, which meant doing something with the dog’s genital. Mummy was not to know about this, not only because she would in any case object to it, but also because he felt that Bobby stood for Daddy and [his brother] Paul and therefore Mummy would feel that Richard was robbing her of them. The fear that the bad Hitler-penis inside him would control and destroy him made him want to throw it out of himself (as well as out of Mummy.) This increased his wish to take in Daddy’s ‘good’ genital, which would give him pleasure as well as reassure him against the fear of the bad penis. But he feared that he would in this way deprive Mummy, who he also felt contained a ‘good’ Daddy genital.

Medical case studies: Klein If a reader goes through this material reading only Richard’s words and Klein’s descriptions of his actions without her added “interpretations,” a rather different impression might emerge: one of a young child who is frightened and upset by the ongoing war , has a strong fascination for trains, ships, and planes, and loves his family. Although Richard’s obsessional interests were apparently strong enough to cause him to be excluded from school, these are addressed only in the context of Freudian symbology, never as actual personal interests or occupations. Richard’s drawings are framed on either side by Klein’s interpretations, binding them closely to the written text and discouraging independent interpretation of their content.

Medical case studies: Klein The analyst is portrayed, both in Klein’s narrative and in the notes to other professionals that accompany it, as an omniscient observer, and a powerful healer. This piece was written for a professional or student audience, and presents a powerful, self-affirming (and even self-aggrandizing) portrayal that is likely to have a strong appeal to the chosen readers—I would argue that her self-portrayal is far more powerful than her portrayal of Richard. The power of this work may lie more in its appeal to its chosen audience, more than in the utility of the actual analytic material. It illustrates what child analysis might consist of, and promises practitioners and students that taking on the mantle of therapist will provide them with a high degree of personal competence and power. It acts as an initiatory document, within which secrets are revealed that, once mastered, can give you special status.

Medical case studies: Axline Psychotherapist Virginia Axline’s book Dibs In Search of Self (1964) purports to be a case study of a specific “emotionally disturbed” child whose symptoms are consistent with an autistic spectrum disorder. My research indicates that “Dibs” is more likely to be a composite of several children Axline treated, and that many elements of the narrative are probably fictional. Dibs remains one of the most-read books in child psychology, and has been marketed as an account of successful play therapy. The account is written in first person, with much material from Dibs himself presented in quotes. Axline frequently writes about Dibs’ internal emotions based on his facial expressions or on her own interpretation of his play, even during the early part of their interactions when his speech was limited to simple utterances such as “Dog? Cat? Rabbit?” and “Go store!”

Medical case studies: Axline It’s impossible to analyse this text without noticing how often, and how facilely, Axline attributes psychological explanations to her patient’s words and behaviour. For example, when Dibs removes walls from a dollhouse in her playroom, Axline follows a description of his simple words and actions with a comment of her own: “And in this playroom Dibs took away a little of the walls he had built around himself.” Axline employs a full range of rhetorical and fictive techniques to build a narrative aimed at both a professional and student/mainstream audience. The resulting text employs little professional jargon. It presents her experiences with Dibs as a trajectory from “otherness” to “normalcy,” with no notable attention to any physical symptoms that may have been present, other than as the outcome of psychological malfunction. The child’s developmental difficulties and unusual behaviours are attributed directly to his mother’s “failure to relate to her child with love, respect, and understanding.”

Medical case studies: Axline The book concludes with a happy ending, including a grateful Dibs dubbing Axline “the lady of the wonderful playroom.” Based on spending over a decade reading literature about autism, I think this is highly significant. It appeals to all potential audience members: professionals, who see their expertise validated and appreciated, and students, who are inspired to achieve the therapist’s state of omniscience. And although I would have to say it’s written in “parent-bashing” mode, even parents may take away a positive message: that there is hope. Looking strictly at sales figures, the most popular narratives of autism have historically been those that offer a prescription and a happy ending.

Medical case studies: Bettelheim So much has recently been written attacking the veracity of Bruno Bettelheim’s accounts of his work with autistic children that I need not add to the chorus. That said, his work formed the basis of most practitioners’ beliefs for nearly 40 years, and is still core to practice in many countries. Bettelheim wrote twice about “ Joey,” a child obsessed with machines and mechanical processes, in a lengthy article for a popular audience and in a dedicated section of his book Infantile Autism: The Birth of the Self (1967.) The latter account comprises material from the Scientific American article an additional observations, and is the one that I analysed. NOTE: a master’s thesis about “Joey” by M. Monk is also said to exist, but I have not been able to locate it.

Medical case studies: Bettelheim Bettelheim’s account would be fascinating even if read strictly as a work of fiction. It also fit very neatly into social debates raging at the time about the mechanisation of human society, such as the work of Jacques Ellul, giving it added interest. Bettelheim uses a plural voice throughout much of this case study, intimating that his findings are shared by the Orthogenic School staff as a whole. This gives added power to his words, and may have served to deflect criticisms that might otherwise have been raised about his own somewhat murky educational and professional background. By resorting to the “royal we,” he encouraged the reader to believe that his entire staff observed the same behaviours in Joey, and came to the same conclusions about their meaning and, eventually, the child’s treatment. The particulars of Joey’s case are reported in a highly descriptive narrative, interspersed with interpretive statements from Bettelheim, and illustrated with two photos and eight of the child’s drawings.

Medical case studies: Bettelheim • The following brief passage is typical of the text: • A fan was something Joey could take apart. He could put it together again. He understood it. He was not as helpless about that part of the experience as he was about the experience in toto. If the fan could stand for the total experience, if machines could be as totally important as parents, could even stand in for his parents, maybe he could understand and master the experience itself. • Bettelheim describes his leap from the observable (Joey can take apart fans and put them back together) to the interior (this activity is an analogy and/or a substitute for understanding what makes other people tick) as “deductive,” but conflates his “deductions” with facts by writing them between seemingly objective observations. He leads readers along the same path of “deductive” reasoning that he followed, without explaining the relationships between the facts and the theory.

Medical case studies: Bettelheim The representation Bettelheim creates of Joey is one of complete otherness: he variously describes the child as “a complex machine,” a “boy-machine,” “a robot,” and “a machine-powered body.” As a story, Bettelheim’s case study of Joey recalls the narratives of morbid curiosity that characterise so much early literature on disability—only in place of speculations on humours or sin, he substitutes the appearance of scientific certainty. Joey’s “machine-powered body” is a defense he has built to protect himself from an indifferent mother, memories of witnessing the primal scene as an infant, even diapering practices that were “businesslike” rather than performed “with satisfaction,” he says. No explanation is offered as to why such common occurrences should have resulted in a catastrophic and unusual reconfiguration of behaviour in this child.

Medical case studies: Bettelheim Nor is any mention made of medical tests, or of the use of “objective” psychological or intelligence testing. This serves to buttress the idea that an expert observer—the therapist—can identify the problem, analyse its causes, and provide the necessary treatment without assistance from any other experts. Like the work of Klein and Axline, this appeals to individuals who want to be powerful, whether they are professionals or students who hope to be professionals. From the point of view of people who have been diagnosed with autism, however, it assumes a position of powerlessness in which others will diagnose, analyse, and treat, a process in which one’s only personal contribution will be cooperation and compliance. Bettelheim’s words gain additional power from his use of rhetorical devices, and from employing powerful metaphors (the “empty fortress” is just one of these.)

Medical case studies: “objective” observations I have examined quite a few case studies that are based on using so-called “objective” diagnostic and observational tools. These include case studies by Eric Schopler, Rita Jordan, and Chris Gillberg. Interestingly, this approach has been adopted enthusiastically by special education professionals. It seems that for this group, a diagnosis is made more concrete by the presence of Weschler scores, Sally-Ann tests, and EEG findings—even when the data does not indicate a specific direction for educational practice. Harvey Molley and Latika Vasil (2002) have examined this phenomenon in relation to Asperger syndrome, part of the autism spectrum disorders family. They write that this appeal to “objective” medical data allows educationists in particular to brush aside questions about the social construction of Asperger syndrome as a disability. This argument has merit, and deserves further exploration. Data may also be sought to underpin educational practice, however, or to ensure that children receive beneficial program adaptations or services.

Medical case studies: “objective” observations The language used in “objective” data-based case studies tends to be dry. Perhaps that’s why even now more non-professionals have read therapists’ accounts of autism in the 1960s than current journal articles. Therapists tend to tell stories, and to set disability within a narrative structure that has a familiar trajectory (problem—struggle—resolution.) This is not the case when autism is written up like a medical condition, using the conventions of that form. When Eric Courchesne (1998) and his colleagues discuss the neuropsychological results of seven people with Asperger syndrome, for example, the resulting text is heavily laden with acronyms, numbers, citations, and specialist language: In a group of 4- to 6-year-olds characterized with PDD and differentiated into AD and AS groups by the presence of significant history of language impairment for AD, but not for AS children, it was found that the AD children performed poorly on the Verbal Reasoning subtests of the Stanford-Binet Intelligence Scale (4th ed.) (Thorndike, Hagen, & Sattler, 1984).

Medical case studies: “objective” observations Courchesne et al’s article provides test scores and even brain scans of the seven people studied, but the people themselves—their backgrounds, lives, personalities, desires, interests—are absent. Where the therapist accounts tend to place the patient in the background as an object to be interpreted or acted upon by experts, or highlight the patient only as an object of curiosity, the patient-as-person is strangely abstracted in these accounts. Although they are no longer on display for the public’s education or amusement, these children have become disembodied brains: “cases” without names or faces.

Personal “case studies” If you have read books by people diagnosed with autism, it may not have struck you to ask in what ways the text was mediated before falling into your hands. However, most of the best-known people with autism who have written published autobiographies have worked with non-disabled editors. Temple Grandin’s co-editor gets a cover credit, but many do not. The Internet has allowed far more people with autism to present their own “case studies” in a less mediated fashion. Many of these accounts can be accessed through Web sites like www.autistics.org, which are run by and for people with autism.

Personal “case studies” Jim Sinclair’s story “Bridging the Gaps” (1992) is largely a response to the many things he has been told about autism by people who have no personal experience of the condition. It is a response to how other people’s assumptions and beliefs have disabled him. As he puts it: The results of these assumptions are often subtle, but they’re pervasive and pernicious: I am not taken seriously. My credibility is suspect. My understanding of myself is not considered to be valid, and my perceptions of events are not considered to be based in reality. My rationality is questioned because, regardless of intellect, I still appear odd. My ability to make reasonable decisions, based on my own carefully reasoned priorities, is doubted because I don’t make the same decisions that people with different priorities would make. I’m accused of being deliberately obtuse because people who understand the things I don’t understand can’t understand how anyone can possibly not understand them. My greatest difficulties are minimized, and my greatest strengths are invalidated.

Personal “case studies” Tim Nickson (1996) is not a fluent writer like Sinclair, but his autobiographical writings also highlight the differences between these personal accounts and those of either parents or professionals. Nickson’s account is chronological, and discusses people and events in his life that were important to him: his favourite birthday presents, funny things his friends at school did, his hobbies, and what it felt like to be bullied at school. He sometimes discusses his interactions with professionals, and I imagine that his account of events and theirs would make an interesting comparison. He discusses his special interests (drawing, horror films) matter-of-factly, not as symptoms or as evidence of character flaws, but as part of his life and his efforts to cope with situations that left him somewhat powerless. He is an active agent in this account—a person who acts according to the abilities and circumstances in which he finds himself, based on highly personal motivations.

Personal “case studies” Sinclair, Nickson, and others present an alternative version of the autism narrative. They acknowledge impairment where it exists, but proudly discuss achievement as well—not as something remarkable but as part of their personal identity. They generally don’t discuss their test scores, and few have much use for psychologists’ theories about autism. As Sinclair puts it, “I find great value and meaning in my life, and I have no wish to be cured of being myself.” Personal “case studies” may be written for a parent/professional audience, like Sinclair’s, or for a peer audience, like Nickson’s. The former are more likely to directly address issues of impairment and disablement, while the latter conform more neatly to the conventions of diary, “blog,” or autobiography.

Parent “case studies” There are close to 50 parent-written accounts of autism in print, not counting those in electronic form only or those that have been disguised as clinical accounts. These books can be roughly divided into two categories: pathographies, or “illness narratives;” and accounts of using a specific type of therapy. Many texts of the second type are advocacy or instructional literature, although they may also include elements of illness narrative (for example, Let Me Hear Your Voice by Catherine Maurice.) Avdi, Griffin, and Brough (Journal of Health Psychology, 2000) have examined how parents construct the “problem” of ASD during the assessment and diagnostic period. They note that parents must engage with the discourses of “normal development” and “disability,” as well as with the medical model of autism. One area these authors touch on only briefly is the effect of autism on the family, including stigmatisation of parents’ identities as well as of the child with autism. I would argue that many parent narratives have coping with this “spoiled social identity” is at core to many such narratives as coping with autism itself.

Parent “case studies”: Park Clara Claiborne Park’s book The Siege: The First Eight Years of an Autistic Child (1967) combines all three of these types. It was written in part as a deliberate response to Bettelheim, who stood higher than any other “authority” on autism in the 1960s. Park walks the reader through her daughter Elly’s first years, from birth, to the first inklings that there is a “problem,” to diagnosis, and to such treatment and education as was available to a well-off, professional family at the time. At the end she comes round to the idea that what Elly needs most is respect for her personal integrity, support for her special talents, and assistance with those tasks she finds difficult. This approach seems to have worked well, as the adult Elly (still severely autistic) is an accomplished artist and strong self-advocate, who lives independently with community support. Her family has also coped with its challenges, including explicit stigmatisation. Park was able to put forward her case in The Siege, which she has later stated was a powerful factor in holding on to her own sense of personal worth as well as an act of advocacy for her child and others with autism.

Parent “case studies”: Park Park’s prose is fluid and sometimes even poetic, but as she is a lecturer in English literature, that should be expected. She shows a keen eye for detail, focusing on kinds of events that interest parents of “typical” children as well as unusual behaviours. Park is forced to confront realities that she had not expected, including the stigmatization of “mental illness” (autism was then thought to be analogous with childhood schizophrenia, and non-organic in cause,) the discourse of “normalcy,” and the medical model of autism. It is perhaps Park’s account of being a parent subjected to psychiatric interrogation that is the most powerful part of her narrative. It made The Siege a word-of-mouth bestseller among parents with autism, and presented a rational, well-researched counterpoint to The Empty Fortress (the symmetry of the titles was not an accident.) Several individuals have pointed to the publication of The Siege as a watershed event in the history of autism—quite a claim for a simple personal narrative with no miracle cure in sight at the end.

Parent “case studies”: Hundley Joan Martin Hundley’s The Small Outsider (1971) performed a similar role in Australia in terms of being a flashpoint for parent advocacy and support. Hundley’s writing is less “literary” than Park’s, and perhaps less sentimental. She recounts how she engaged with the “disability discourse” literally on the first day of her son’s birth, when his feeding difficulties and manner gave rise to vague suspicions that he was unlike her other children. Because Park was 40 (an “elderly multi-para” in medical lingo), she had been anxious about the child’s health even before his birth. Her construction of the child already included illness or disability as a possible outcome. He developed severe allergies and eczema in addition to continued feeding difficulties in his first year, adding to his discomfort and her worries. Preoccupied with his poor physical health, she was only gradually aware that his behaviour was also unusual.

Parent “case studies”: Hundley Here is an excerpt from the text describing the time when the “problem” was reconstructed: By the time David was two years old he appeared to be unaware of food, and even stopped holding crusts inn his hands. His interests narrowed down to his bottles, two plastic soap-dishes, water, which continued to excite him, and the wheels of his stroller, which he spun round and round till his fingers bled. There was never a period in his life when things went smoothly, but now began the most frightening period of all. He became less and less interested in the world around him till for some of the time he seemed to be in a sleepwalking state.

Parent “case studies”: Hundley Hundley discusses comparing her son with his siblings and other children, and trying to construct a way of seeing him as “normal.” She also discusses her engagement with the medical model of autism, which she found lacking, and with disability stigma as it applied both to David and to her family. At one point she writes, following a public fracas that left three people injured: How could I go on? How could I face a lifetime of staring faces every time I took David out? The embarrassment was already hard for [his sister] Ellen to take. What sort of future was there for her with such a child in the family?

Parent “case studies” As Griffin et al note, most research into the effect of a disability diagnosis on family members relies on the paradigms of “loss” and “stress reaction.” Researchers assume that having a child who is seen to have a disability will be perceived as a loss, and/or as a stressful change in the family dynamic. Parent “case studies” of autism tend to look away from these paradigms and identify the effects of the disability discourse quite clearly. Some, like Hundley and Park, respond to this awareness with activism and active rebuttal of stigma; others respond by embracing the medical model and seeking a “cure.” Most express an ambivalent position, without either the tone of omniscient certainly that pervades so much of the medical case studies, or the narratives of loss that some researchers might expect. Griffin’s findings were similar, with parents “holding multiple, ambivalent and often apparently conflicting meanings in their talk.”

SOME CONCLUSIONS Applying media and cultural studies techniques seemed most useful when examining the medical case studies, but was also helpful in framing comparisons between these narratives and both the personal and parent narratives. Perhaps this is because the position of power within the medical narratives is much clearer. Normally the genre of medical writing is highly systemised, but only the “objective” observations followed these conventions as expected. The texts from Dickinson and Kanner showed evidence of systematic data collection, but were not presented in a strict format. The Klein, Bettelheim, and Axline texts were written a format that more closely approximates a fictive narrative than a medical text. This is a convention they share with other psychology case studies.

SOME CONCLUSIONS The parent “case studies” present an interesting contrast, both in their ambivalent tone and in how the writers position themselves in relation to the discourses of normalcy, disability, and the medical model. There is a juxtaposition between acceptance of these mainstream discourses and of their subversion through the seemingly straightforward description of their own family’s experiences. Exploring the difference between these narratives and the narratives of “loss” and “stress reaction” that the literature on parent reactions to childhood disability would lead one to expect could be a very worthwhile pursuit. It could be that these parents experienced their child’s diagnosis with autism quite differently because the medical model of autism at that time put the blame on poor parenting, but examination of more recent narratives reveals a similar pattern.

SOME CONCLUSIONS The personal “case studies” are the most interesting of the three groups, and the most resistant to the application of these tools for analysis. Part of the reason is that narratives written by people who have communication difficulties and a different pattern of interests than most of their peers do not always follow the prescribed conventions of any genre. Dickson’s text, for example, is diary-like but most non-autistic readers would find it idiosyncratic in what it chooses to emphasise. Sinclair’s text is more accessible, but it was written primarily for a non-autistic audience, and represents an attempt to explain some discrepancies between what the “experts” have to say and the lived experience of autism. As mentioned earlier, readers need to consider issues of editing and other forms of mediation before assuming that all first-person narratives of autism are equally authentic.

Mitzi Waltz Autism Research Unit/School of Arts Design Media & Culture University of Sunderland