Autism and the Myth of the Person Alone

Douglas Biklen, Richard Attfield, Larry Bissonnette, Lucy Blackman

• Publisher: NYU Press
• Year: 2005
• ISBN:
  9780814787052
• Topic: Psicología
• Subtopic: Trastornos del espectro autista

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.

1

Framing Autism

Douglas Biklen

The Person inside the Body

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 eye as he types with the index finger of his right hand. When he first began this way of expressing himself, he needed someone to stabilize his arm as he typed, prompting him to pull back after each letter selection. Now, however, he can type without any physical support, though he requires his mother or a teacher to sit beside him as he types; he says the presence of his mother or teacher helps him maintain attention. The words come slowly but clearly.

On a late June day when we met—I had come to discuss his contribution to this book of seven narratives by people classified as autistic—it was exceptionally hot. Alberto is small in stature and has deep brown, shortly cropped hair and a square chin. On this summer day he had a brilliant tan and was wearing a white T-shirt, blue shorts, and sandals. We had met many times before over the preceding eight years, so I knew that he was not a person who could walk up to me and shake my hand. Instead, it was left to me to say hello and hold out my hand, palm up, for him to come and put his hand on top. Then I shook our hands. We sat down at the table on his veranda, overlooking the sea, on Ezra Pound Place; the hillside street is named for the writer who at one time lived in a villa about a half-mile away, within view of where we sat. As Alberto’s mother, Patrizia Cadei got out his electronic typewriter and placed it in front of him, propped up on its case so that it tilted toward him, Alberto put his thumb in his mouth and began sucking it. His mother told him to take his thumb from his mouth and then reached over and flicked at his hands, as if to make sure it happened quickly. With the typewriter in front of him, Alberto began to type, slowly but at a regular pace. His mother translated into English as he typed in Italian.

“I am happy to reason things out with you,” he wrote. He shook his head as in a tremor, squinted his eye, and typed with his right index finger, slowly. “Do we examine only the script mistakes or do we examine the actions I have described?” I smiled as his mother translated these words from the Italian. I suppose I was smiling because it was exciting to see him produce the words. As disabled as Alberto appears in body, the content of the text he was producing was perfectly conversational. He is thin and his movements are halting in everything from typing to walking, yet in our conversation that afternoon, I could not help but feel that Alberto was in charge of the direction it was taking.

He had written a dozen pages that he had sent to me earlier in the year. I had then commented on them, asking for clarifications and additional examples to illustrate some of his points. We e-mailed back and forth. He had made a number of changes, but now I was interested in getting him to elaborate further. The process reminded me of my work with university students, for here I was pleading with Alberto to provide more details to explain himself. He writes at a high level of abstraction, often leaving out or neglecting examples to illustrate his meaning. “Give me specifics,” I begged. “I need to be able to visualize what you are telling me.” Alberto is not one of my students, but that day he might as well have been, for I wanted to say to him: “specifics, specifics, specifics. For me, you cannot be too specific.” A standard I often use to convey the level of detail needed is to imagine the reader as a film director who has to have enough concrete description in the script to be able to create scenes that the scriptwriter intended. I wanted Alberto to let readers see what autism means to him.

By Alberto’s own description, and according to my observations, physical movements, particularly sequenced actions such as getting a glass of water, eating food, or taking out his typewriter, are difficult for him. It is not that Alberto has any palsy. He does not. It is just that he moves slowly and appears awkward. When grasping a spoon, Alberto uses his fingers to press it against his palm. He does not handle it with his index finger and thumb. If there is meat on the table, a dinner partner must cut it for him. He has not been able to do complex things such as cooking a meal, although he could stir a spoon in a pot. Nearly any action that requires sequencing leaves him stymied. When he walks, Alberto does so slowly—”I take mechanical steps [short steps] if I walk alone, but if taken by the hand or the arm, I walk regularly.” On his own, he makes no quick moves. He resembles somewhat a person walking in the dark, feeling out the terrain as he goes. He sometimes flicks his fingers next to his left eye, and he often breathes shallowly. He does this when he feels anxious. It is, in his words, “hyperventilation.”

Alberto is a person whom most autism experts and perhaps the public as well would describe as among the most disabled of all people labeled autistic. Anyone can see his extreme difficulty with movement. Anyone can observe that he does not speak. And anyone who has spent even a bit of time with him can see that without a typewriter in front of him he has quite limited ways to communicate other than to pull his mother or another person to something he might want or with a simple gesture: “at the tender age of 24 I have learnt to nod and say no with my head. I have difficulties to remember how to do it when requested and I make a big effort to do it.” But what do halting, awkward, dissembled movement and difficulties in making gestures connote? Many people might look at Alberto and presume that somehow there is a correlation between physical awkwardness and impaired intellect. But they would be wrong. If one person could embody the contradictions that seem ordinary with autism, Alberto might be that person.

Alberto says that his difficulties are not with thinking and knowing but with doing or acting. Looking at his typed sentences, it is hard not to recognize that his many physical difficulties, with speech, movement, and any other actions cannot be taken as evidence of his intellectual abilities. His struggle seems to be in performance. When I asked Alberto to give me examples of things that are hard to do and things that he finds easier, he responded, in Italian, “Elementare Watson.” He typed and his mother translated into English, with him explaining that literally “everything is hard.” With but a few exceptions, he cannot do anything that involves more than one action, one step. Yes, he has learned to brush his teeth, but only because of repeated practice and with much prompting, step by step, “Open the toothpaste. Put the paste on the brush. Pick up the brush.”

As he contemplates finishing secondary school and advancing to higher education, it is still the physical aspects of daily life that can be most daunting. In virtually every aspect of living, he must rely on others. He is frustrated, for example, with the fact that anytime his mother leaves the house to do an errand, he must accompany her. Recently, Alberto’s mother Patrizia had to go shopping and so she insisted that he join her. It was a Friday afternoon and there was no one else to stay with him—Alberto’s stepfather was at work and his regular care worker was off for the afternoon. “There was nothing I could do about it,” Patrizia told me, “no one to stay with him.” She sympathized with his frustration but told him, “Either you learn to defend yourself at home or you come with me.” Naturally, he was angry. On the subsequent Sunday, he pulled her to the typewriter and typed out: “Let’s talk. When you go out, you must leave one window open and leave the tape recorder.” “What’s the use of the tape recorder?” his mother asked. “You record your voice shouting for help,” answered Alberto. “Teach me how to use the recorded voice,” he typed. With more than a hint of skepticism, Patrizia at once asked and argued with Alberto, “In a panic you can do this? Why do you want to do this? It’s too complicated.” “He just lacks the practical,” Patrizia told me. She felt that he sometimes comes up with ideas that, given his movement difficulties, are fanciful. With some additional discussion, however, they settled on the idea of Alberto learning to use a one-button panic alarm on the phone. While she regarded his own idea as too complicated, she admired his having grappled with the problem. Now, Alberto does stay at home alone for several hours at a time.

While Alberto’s struggles with performance are more severe than those of most of the other contributors to this book, all the contributors do have significant movement problems that leave them on many occasions feeling and looking not only tongue-tied but also body-tied. This raises important questions: How should people who meet Alberto interpret him? Are his physical actions never indicative of his thinking abilities? If they do sometimes reflect his intentions, how can the observer know when they do and when they do not? And these practical questions lead to larger more theoretical ones. For example, if action does not necessarily reflect thought, what does this say about how scholars have constructed the meaning of mental retardation and of intelligence? What constitutes competence? Is physically independent action a component of intellectual ability? And, what constitutes fairness or justice for people who seek to participate in society in ways that differ from the so-called normal?

The Contributors

To date, firsthand accounts of autism have been produced nearly exclusively by people thought to be “high-functioning,” including Williams (1989, 1994), Grandin (Grandin and Scariano 1986), and Barron (Barron and Barron 1992). The term high-functioning is not a technical term; it has been used in both professional and lay discussions to refer to individuals who evidence the ability to converse in oral dialogue, using speech. It is a highly problematic term, for it implies that those people who can carry on spoken conversations are intelligent and those who cannot, are not. Would anyone label Stephen Hawking, for instance, “low-functioning”? Classifying anyone as “low-functioning” is a potentially damning assumption, for it could easily forestall efforts to aid a person’s participation in academic subjects in school or in community life.

Alberto and the other contributors to this book have been thought of by some as located at the opposite end of the autism spectrum.¹ At one point or another in their developmental years, all were given pessimistic prognoses. Even though an individual teacher, consultant, or diagnostician might have been optimistic about both their abilities and their potential, all but two were denied access to mainstream education for most of the developmental years. One of the contributing authors at age nine passed a state mathematics exam and could read at grade level, yet he was still not accepted in mainstream classes. Alberto, who did have legal access to regular classes, was thought by most educators to be unable to benefit from academic instruction. Educators typically believed the contributors to this book unlikely to develop literacy, unlikely to learn much more than rudimentary self-help skills, and unlikely to determine their own futures, even though some had already shown such abilities. In their early years, all of the authors were caught in the position where a few educators, diagnosticians, and consultants saw their competence, and yet such individual assessments were overwhelmed by the inertia of education systems that preferred to cast them as unworthy of full access to academic instruction. During their developmental years, all but one were unable to speak conversationally in complex sentences at the typical speed of conversation that others might use, although several could eventually do this if allowed to combine their speaking with typing. One can now speak in conversational sentences without also typing, as long as he can speak slowly—literally, one distinct syllable at a time—and if those listening to him are used to his pronunciation (it is sometimes necessary for the listener to ask him to repeat or spell out hard-to-understand words).

In their own ways, like Alberto, each of the authors included in this book is already recognized as having “broken through” to a measure of acceptance and respect in mainstream culture. Tito Rajarshi Mukhopadhyay was born in India and learned to speak and write after much intense support from his mother, a speech therapist, and others. By the age of eleven he had written a book, Beyond the Silence (Mukhopadhyay 2000), that was published by the National Autistic Society in England and was the subject of a BBC documentary (Terrill 2000), and he appeared on the U.S. television program 60 Minutes II in 2003 (Mabrey 2003). He was home-schooled in India because no typical school would have him. Sue Rubin grew up in southern California and is now a college student; until age thirteen, however, she was diagnosed as both autistic and severely retarded and was thought incapable of academic work. She has been featured in several Public Broadcasting documentary segments in California and has published two opinion editorials in the Los Angeles Times. Richard Attfield lives in England, where he writes and has occasionally lectured on autism. He was accepted as a student at college; at the age of fifteen, he won his first writing award in the “Young Writers Competition” (l993) from among thirty thousand entries.² Prior to his late teen years, aside from being included in a playschool program, he attended only special schools, with the implication that he could not benefit from participation with students deemed nondisabled. During his segregated schooling he was given some “basic academic work, e.g. telling time, simple maths, reading and writing, science—repeating what I had learnt at home.” Then, at age fifteen, he was given a “life skills” curriculum. At this point he demanded academics. Throughout his school years, his mother supported his communication. Jamie Burke lives in Syracuse, New York, where he attends high school. He was included in regular academic schooling from the age of three. In 2002 he wrote and narrated a documentary about how he learned to speak after first learning to communicate by typing (Kasa-Hendrickson et al. 2002) and was the subject of a research article on the same topic (Broderick and Kasa-Hendrickson 2001). Larry Bissonnette lives in the eastern United States and is an artist. He communicates through typing and through his paintings. His work was featured in a CNN news account and has been exhibited at art shows and in galleries in New York City, in Europe, and in the state of Vermont, where he resides (Sellen 2000). Lucy Blackman lives in Queensland, Australia, where she is a graduate student and writer. In 1999 she wrote an autobiographical book, Lucy’s Story: Autism and Other Adventures.

In their chapters, the contributors discuss how autism affects their speech and most aspects of how they interact with other people and what they can do physically. I will not try to summarize here what each can do or what some have difficulty with, for they are complex individuals and evidence differing abilities in varied contexts, as will be revealed in their chapters. To this day, only one of the contributors can carry on a back-and-forth conversation without first typing his side of the dialogue; a few can say the words they type, before and as they type them, but for all of them communication is relatively slow compared to the rapid flow of speech they hear and respond to from others. Attfield, for example, can and does say sentences, and has been able to do so from the age of two, and yet his typing is more complex. In typing he carries on full, rich conversations. The sentences he has spoken aloud include, for example: “I am so annoyed; I will ask mum; of course I do like it; can I get some lunch please; I do not care; I would like some grapes please; it was all my fault; I wanted to speak; the telephone rang; maybe it was the doorbell.” These are sentences that he said over a few weeks. “But as you say,” he told me, “this is not holding a conversation.” He had spoken such sentences “in response to being spoken to.”

Despite the obvious accomplishments of the contributing authors, I do not want to imply that they are unusual among people classified as autistic, anomalies within an otherwise ordered taxonomy of disability. If they are unique in some ways, such uniqueness is probably typical. If there are similarities among them, these may give insight into alternative ways of interpreting autism. As will become obvious, for example, Alberto’s characterization of the body as not easily complying with intention is repeated in multiple ways in several other narratives. Other authors introduce such topics as how to start speaking conversationally, how to differentiate speech that is meaningful from speech that is “automatic” and unintended, anxiety, obsessive routines, imagination, sensory awareness, self-abuse, and movement difficulties. In the concluding chapter, I discuss directly how these accounts might inform educational practice. First, however, it is useful to recall the origins of the concept of autism.

The Origins of Autism as a Disability Category, and the Idea of Competence

Leo Kanner, a doctor at Johns Hopkins University, first described and named autism. In an article titled “Autistic Disturbances of Affective Contact” (Kanner 1943/1985), he constructed the idea of autism from his clinical notes and parent reports on eleven individuals whom he saw at Johns Hopkins Medical Center between 1938 and 1943. Kanner concluded that his patients shared particular qualities that constituted a “unique ‘syndrome,’ not heretofore reported,” and that they were not “feebleminded” or “schizophrenic” (Kanner 1943/1985, p. 41).³ For the eleven children, he both described and hypothesized particular qualities. Among these were “a marked limitation of spontaneous activity”; “stereotyped movements with [the]… fingers, crossing them about in the air”; spinning objects; lack of initiative; requiring prompts; showing “no interest in our conversations”; not “good with cooperative play”; afraid of mechanical things, for example, a “vacuum cleaner… elevators… spinning tops”; and a desire to keep things in a fixed order (pp. 13–19). The principal “‘pathognomonic,’ fundamental disorder,” he argued, “is the children’s inability to relate themselves in the ordinary way to people and situations from the beginning of life” (p. 41; author’s italics). Kanner called this “inborn autistic disturbances of affective contact” (p. 50; author’s italics). The classification of autism was born.

Though an ocean separated them, Asperger’s account of autism from his clinic in Vienna, Austria, resembled Kanner’s in many respects. For example Asperger, observed motor difficulties of his subjects, not unlike Kanner’s observation that some of his patients were “clumsy in gait and gross motor performances” (Kanner 1943/1985...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Dedication
• Contents
• Acknowledgments
• Introduction
• 1 Framing Autism
• 2 I. An Introduction to Sue Rubin
• 3 I. An Introduction to Tito Rajarshi Mukhopadhyay
• 4 I. An Introduction to Lucy Blackman
• 5 I. An Introduction to Larry Bissonnette
• 6 I. An Introduction to Alberto Frugone
• 7 I. Introduction to Richard Attfield
• 8 I. The World as I’d Like It to Be
• Bibliography
• Index
• About the Author