Autism and the Myth of the Person Alone

Autism and the Myth of the Person Alone

DOUGLAS BIKLEN
Richard Attfield
Larry Bissonnette
Lucy Blackman
Jamie Burke
Alberto Frugone
Tito Rajarshi Mukhopadhyay
Sue Rubin
Copyright Date: 2005
Published by: NYU Press
Pages: 304
https://www.jstor.org/stable/j.ctt9qg183
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  • Book Info
    Autism and the Myth of the Person Alone
    Book Description:

    Autism has been defined by experts as a developmental disorder affecting social and communication skills as well as verbal and nonverbal communication. It is said to occur in as many as 2 to 6 in 1,000 individuals. This book challenges the prevailing, tragic narrative of impairment that so often characterizes discussions about autism.Autism and the Myth of the Person Alone seriously engages the perspectives of people with autism, including those who have been considered as the most severely disabled within the autism spectrum. The heart of the book consists of chapters by people with autism themselves, either in an interview format with the author or written by themselves. Each author communicates either by typing or by a combination of speech and typing. These chapters are framed by a substantive introduction and conclusion that contextualize the book, the methodology, and the analysis, and situate it within a critical disability studies framework. The volume allows a look into the rich and insightful perspectives of people who have heretofore been thought of as uninterested in the world.

    eISBN: 978-0-8147-3910-5
    Subjects: Psychology

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Acknowledgments
    (pp. ix-x)
    Douglas Biklen
  4. Introduction A Discussion of Methods
    (pp. 1-21)

    Autism and the Myth of the Person Aloneis a qualitative study in which people classified as autistic are primary, contributing authors. Unlike any prior research, it draws on the perspectives of people who have previously been perceived as both autistic and retarded and is written from a critical disability studies framework. A basic premise of the book is that people classified as autistic, even those who cannot speak, are thinking people with ideas about their lives and their relationship to the world. I call this orientation thepresumption of competence. The wisdom of this lens will become clear with...

  5. 1 Framing Autism
    (pp. 22-79)
    Douglas Biklen

    Alberto Frugone lives with his mother and stepfather in a house far above the town of Zoagli in northern Italy, on the coast of the Mediterranean. Until 2003, when he was twenty-four years old, he attended secondary school. He has taken Italy’s postsecondary qualifying exams, and so he may become the first nonspeaking Italian classified as autistic to attend a university.

    I first met Alberto several years ago when he had just begun learning to communicate by typing. He still communicates in this way, typing slowly, letter by letter. Alberto is blind in one eye. He squints with his left...

  6. 2
    • I. An Introduction to Sue Rubin
      (pp. 80-82)

      I first met Sue Rubin in the mid-1990s when, as a teenager, she was just emerging into communication. She is short in stature and thus appears younger than her years. At that time, her mother held her arm as she pointed to letters on a letter board. Several years later she developed the ability independently to point to letters on a letter board or on a computer or hand-held communication device. When I met her in the mid-1990s, she had just moved from segregated special education into inclusive academic classes.

      Up until that point, she had been defined as autistic...

    • II. A Conversation with Leo Kanner
      (pp. 82-109)
      Sue Rubin and Leo Kanner

      Although behavioral characteristics of people with autism are so vast, I find many similarities and many discrepancies between Donald’s behaviors and my own. Autism is a world so difficult to explain to someone who is not autistic, someone who can easily turn off the peculiar movements and actions that take over our bodies. Donald’s wandering smiling is something that I simply cannot do. His ability to show emotion, whether appropriate or not, in my opinion works to his advantage. My abilities limit me to smiling only when prompted. In a social setting, an example of being prompted might be, someone...

  7. 3
    • I. An Introduction to Tito Rajarshi Mukhopadhyay
      (pp. 110-117)

      Tito Rajarshi Mukhopadhyay was thirteen years old when we completed the interviews that were the basis for this chapter. Tito grew up in India, mainly in the city of Bangalore, where his mother moved so that he might be near schools and medical services. As it turned out, he was not accepted into academic schools and so was mainly homeschooled. By the age of eleven he had written a book,Beyond the Silence: My Life, the World and Autism(Mukhopadhyay 2000) and was the subject of a BBC documentary titledInside Story: Tito’s Story(Terrill 2000). He has subsequently been...

    • II. Questions and Answers
      (pp. 117-143)
      Tito Rajarshi Mukhopadhyay and Douglas Biklen

      Biklen: You once described going on a train, and seeing a middle-aged gentleman sitting nearby. It sounded as if he was a kind of reassuring, if imaginary, companion.

      Mukhopadhyay: When I wrote about a middle-aged man [Mukhopadhyay 2000], I meant that there was this hypothetical character around me who seemed to be everywhere. I reflect back to those days when he would be my companion while I passed my time with nothingness. Do I relate him with any known face? I do not know what to reply because surely shapes of faces cannot be formed just out of the blue....

  8. 4
    • I. An Introduction to Lucy Blackman
      (pp. 144-146)

      The first lines in Lucy Blackman’s book,Lucy’s Story: Autism and Other Adventures,read, “I came to language late—about twelve years too late. Another five years on I was nineteen and I was enrolled in a literary studies course at University” (Blackman 1999, p. 1). As the book jacket explains, growing up, Lucy created “stories and poems” in her head, having come to language through newspapers and books.

      I first met Lucy when she was a teenager and in high school. She had been communicating by typing for several years at that point. I will always feel indebted to...

    • II. Reflections On Language
      (pp. 146-167)
      Lucy Blackman

      I tend to beat around the bush a bit, so I will say in advance your most successful way of making sense of this bit of writing is by seeing it as a collection of the oddities which I have identified in spoken utterances … —Oh, oh, oh! That is the strangest thing! As I typed that word (“utterances”) I simply had no idea what it meant. Most of the time my speaking self can ready my typed language, and say in my head, “Isn’t that interesting!” but every now and again I don’t understand my visually acquired language.

      Well,...

  9. 5
    • I. An Introduction to Larry Bissonnette
      (pp. 168-171)

      I first met Larry Bissonnette in 1993. He had come to Syracuse to participate in an interview with an NBC reporter on a show about autism and communication. Since then I have gotten to know Larry through his writing and his art and at conferences on autism. He is an accomplished painter whose work has appeared in a number of galleries and is referenced in an outsider art compendium (Sellen 2000). In late January 2003, I viewed several of his paintings at the annual New York Outsider Art Fair on Houston Street in Manhattan.

      When we met in 1993, Larry...

    • II. Letters Ordered through Typing Produce the Story of an Artist Stranded on the Island of Autism
      (pp. 172-182)
      Larry Bissonnette

      Commentary: Noontime lunches at nicest restaurant in New York City lose their appeal in treatments by worst chefs of awfully tasteless fast food, dealt with comatose preparation, snack bars. Lopping of roaring brooks of individuality by institution is really like making meals out of McDonald’s recipes.

      Going back in desolation where it’s only me and letterless walls is not pleasant to think about. Nothing “apartheids” you like the insensitive world of institutional existence. It’s politically correct to say that kind, needing gratification for giving people started impetus for building structurally sound, not yet humane institutions.

      Let me mention that it’s...

  10. 6
    • I. An Introduction to Alberto Frugone
      (pp. 183-184)

      Alberto Frugone was born on November 25, 1978. When he was four, his mother moved from the north of Italy to Rome. In Milan, when he was two and a half years old, he was diagnosed as having “infantile autism.” Even in the early 1980s, it was not uncommon in Italy that a child with the label of autism would be referred for psychotherapy, as the dominant view at that time in Italy was that autism was a psychiatric disorder. Alberto refers to this period of treatment as “a great loss of time.” In Rome, he received an additional diagnosis...

    • II. Salient Moments in the Life of Alberto, as a Child, a Youth, a Young Man
      (pp. 185-197)
      Alberto Frugone

      I was a child fighting sensorial distortions, attracted by light’s double spell, which altered reality made of perspectives that seemed to have been put there for me to play with. One could say that the light opened vivid rifts between shapes; I would say that the alternation of light and dark was magical. I was emotionally serene because the light was sending back precious dimensions that would give me the desire for stimuli that I certainly received from ritualistic, loving, and unequivocal maternal care. I was often mesmerized by the serenity without which a child doesn’t know how to grow...

  11. 7
    • I. An Introduction to Richard Attfield
      (pp. 198-199)

      I have already introduced Richard Attfield in Chapter 1 and so will be brief here. Richard’s chapter is organized around events in his life and has a strong human rights and inclusion focus. Some of the topics are ones I suggested, based on our conversations, while others are ones he suggested.

      Richard left special schools at the age of nineteen when he gained entrance to college, a pre-university, A-level program where he could study English literature and art history. In 1997 he won the Journalism Category and the Overall Award in a writing competition for college students, sponsored by a...

    • II. The Colour of Rich
      (pp. 199-248)
      Richard Attfield

      I have been given many labels during my life: low muscle tone, ataxia, cerebral palsy, delayed development, retardation, autism, brain dysfunction, learning difficulties, low functional abilities, and as unable to communicate. When I was a toddler one doctor stated, on a five minutes acquaintance, that I was “somewhat backward.” My mother was told “it was nothing physical.” One month later a Consultant Paediatrician wrote: “He appears to understand what is said to him, spoke in single words and has good jargon.” He perceived me as “a child of normal intelligence, possibly with some motor problems” and with “general behaviour” so...

  12. 8
    • I. The World as I’d Like It to Be
      (pp. 249-253)
      Jamie Burke

      Editor’s note: Part I of this chapter is a brief essay by a high school student, Jamie Burke. I first met this author when he was a student at the Jowonio School, a preschool that specializes in supporting students with autism and other developmental disabilities to be included in classrooms with nondisabled students. Jamie was four years old. He had not yet developed a reliable form of communication. He could say some individual words, but not sentences. In the years that followed, he learned to communicate by typing. One summer, when he was twelve, I asked one of my doctoral...

    • II. The Myth of the Person Alone
      (pp. 254-284)
      Douglas Biklen

      This interpretive chapter begins with an analysis of the more general themes that the contributing authors raise, flows to the more particular, and then comes back to the middle ground that therapists, teachers, parents, and others occupy as people interested in supporting people who live under the umbrella termautism. In regard to any of my interpretations and representations, I emphasize two things: first, these are my interpretations, notthe(i.e., not definitive) explanations of the social construct of autism; second, whatever comments I make in describing or interpreting one person’s account, just as in describing any person who has...

  13. Bibliography
    (pp. 285-294)
  14. Index
    (pp. 295-302)
  15. About the Authors
    (pp. 303-304)