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Understanding Autism

Understanding Autism: Parents, Doctors, and the History of a Disorder

Chloe Silverman
Copyright Date: 2012
Pages: 352
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  • Book Info
    Understanding Autism
    Book Description:

    Autism has attracted a great deal of attention in recent years, thanks to dramatically increasing rates of diagnosis, extensive organizational mobilization, journalistic coverage, biomedical research, and clinical innovation.Understanding Autism, a social history of the expanding diagnostic category of this contested illness, takes a close look at the role of emotion--specifically, of parental love--in the intense and passionate work of biomedical communities investigating autism.

    Chloe Silverman tracks developments in autism theory and practice over the past half-century and shows how an understanding of autism has been constituted and stabilized through vital efforts of schools, gene banks, professional associations, government committees, parent networks, and treatment conferences. She examines the love and labor of parents, who play a role in developing--in conjunction with medical experts--new forms of treatment and therapy for their children. While biomedical knowledge is dispersed through an emotionally neutral, technical language that separates experts from laypeople, parental advocacy and activism call these distinctions into question. Silverman reveals how parental care has been a constant driver in the volatile field of autism research and treatment, and has served as an inspiration for scientific change.

    Recognizing the importance of parental knowledge and observations in treating autism, this book reveals that effective responses to the disorder demonstrate the mutual interdependence of love and science.

    eISBN: 978-1-4008-4039-7
    Subjects: Anthropology, Psychology

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
    (pp. ix-xii)
  4. INTRODUCTION Love as an Analytic Tool
    (pp. 1-26)

    This is a book about love. It is a history of autism, one that pays particular attention to the importance of affect in biomedical research during the second half of the twentieth century and the first few years of the twenty-first. I explore the role of love as a social experience and technical discipline. I do this for several reasons. Passions are a key part of the production of knowledge and the identities of contemporary scientists and medical practitioners. Theories of affect, and love in particular, shape the discourses of developmental psychology, psychiatry, and, more recently, biology. Affect and its...

  5. Part one

    • 1 Research Programs, “Autistic Disturbances,” and Human Difference
      (pp. 29-60)

      Historians of medicine like to make the point that explanations for disease reflect the historical moments in which those explanations were produced. They incorporate not only clinical observations but also notions of the “good life” or of the “typical person,” and anxieties about the pressures and stresses to which human bodies and minds are subject.¹ Diagnostic categories are mutable things. They make groups of subjects visible and distinct by describing them, but they then set them free to carry on their business, to resist, reshape, and reform that definition through their own actions. In other words, disorders constitute a modern...

    • 2 Love Is Not Enough: Bruno Bettelheim, Infantile Autism, and Psychoanalytic Childhoods
      (pp. 61-92)

      Bruno Bettelheim once rivaled Montessori, Piaget, and Anna Freud in popularity and influence in the fields of child psychology and development. He is probably best known among the general public for his 1975 study of fairy tales,The Uses of Enchantment. Eight years earlier, he had written an enormously influential book on treating autistic children,The Empty Fortress: Infantile Autism and the Birth of the Self. Although both books captivated the public at the time of their publication and for years afterward, many readers have since focused on flaws in these works and Bettelheim’s questionable research methods. After Bettelheim’s suicide...

    • 3 Expert Amateurs: Raising and Treating Children with Autism
      (pp. 93-124)

      This is a love story, and it begins with a sensitive child. Benjamin (“Ben”) Lettick was born on April 7, 1955. He was the fourth child of Amy and Birney Lettick of New Haven, Connecticut. Amy Lettick had trained as a schoolteacher before her marriage to Birney, a portrait artist. Their son Ben suffered from severe food allergies almost from birth. Amy Lettick took the susceptibilities of her youngest in stride. Dealing with the allergies of her three older children had armed her with strategies for treating him, including keeping a detailed record of diet, immunizations, and reactions. Her diary...

  6. INTERLUDE Parents Speak: The Art of Love and the Ethics of Care
    (pp. 125-138)

    Disability studies in the university emerged from the disability rights movement of the 1970s and 1980s. Conversations about autism are inevitably also about issues that have occupied both scholars and activists. They range from philosophical questions about defining disability and the ethics of treatment to policies regarding access to health care and living supports, deinstitutionalization and patient’s rights, the Individuals with Disabilities Education Act (IDEA), and inclusive education.

    A history of autism focused specifically on parental experience and knowledge cannot hope to incorporate all the lessons that disability studies teaches us, in particular, that we take seriously the accounts of...

  7. Part two

    • 4 Brains, Pedigrees, and Promises: Lessons from the Politics of Autism Genetics
      (pp. 141-166)

      Patricia Stacey is a memoirist who attributes her son’s recovery from autism to “floor time,” an intensive program of early behavioral intervention. Like many parents’ accounts, Stacey’s story of her child’s diagnosis and treatment includes an explanation of autism’s causes. In her version, seemingly unaffected parents exhibit, in milder form, the same behaviors and sensitivities as their children. Autism “runs in the family.”¹ When Stacey describes how a therapist’s passing comment about her tendency to “space out” during sessions with her son helped her recognize her own sensory oversensitivities and defensiveness, she is speaking to a wider community of parents...

    • 5 Desperate and Rational: Parents and Professionals in Autism Research
      (pp. 167-196)

      Jack Zimmerman is the husband of Dr. Jacquelyn McCandless, the author ofChildren with Starving Brains, a guide to biomedical treatments for autism spectrum disorders. In the poem that prefaces McCandless’s book, Zimmerman addresses his granddaughter Chelsea, the subject of those “dashed expectations” and the inspiration for their “lovers’ laboratory.” Zimmerman’s and McCandless’s focus on treating an individual child, the affective and rational challenges of treatment, and the idea that the process of healing is a “journey” are all components of a perspective they share with an international network of doctors and parents. Although McCandless entered the world of autism...

    • 6 Pandora’s Box: Immunizations, Parental Obligations, and Toxic Facts
      (pp. 197-228)

      The November 2003 “Autism Summit” conference of the Interagency Autism Coordinating Committee occupied a large lecture hall in the new Washington Convention Center in Washington, D.C. Heads of the three major autism advocacy organizations joined the rest of the audience to watch presentations on research, advocacy, and education. Officials from the National Institutes of Health (NIH), geneticists, database administrators, parents, and legislators listened to the speakers attentively and mingled in the building lobby. I had been spending a lot of time thinking about the concept of risk as I followed the ongoing debates about the appropriate management of the National...

  8. CONCLUSION What the World Needs Now: Learning About and Acting on Autism Research
    (pp. 229-236)

    None of the debates that i describe in this book has ended. Despite periodic promises that researchers are “closing in” on a comprehensive understanding of autism’s causes, the distance still appears formidable.¹ Many researchers now agree with parents that although autism is a useful term for describing a common behavioral syndrome, it is one that offers few insights into the particular biology of individual children. It may say even less about adults because, in addition to the biological and cognitive differences among them, they have been shaped by experiences over a lifetime. For the foreseeable future, both the facts about...

  9. NOTES
    (pp. 237-312)
    (pp. 313-328)
  11. INDEX
    (pp. 329-340)