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Targeting Autism

University of California Press

There she moved, every, day, among us but not of us, acquiescent when we approached, untouched when we retreated, serene, detached. . . . Existing among us, she had her being elsewhere.
(Park 1982, 12)

I visit the home of parents I recently met. Their five-year-old son is standing on his head on the couch. I go up to him, turn my head to the side, and say, "Hello, Kenneth." "Hello, Kenneth," he echoes.

I enter a room at a hotel where an informal meeting is taking place. As soon as I step through the doorway, a handsome, nicely dressed young man of perhaps seventeen walks up to me and tells me his name. The following exchange then takes place.

"What is your name?"

"Shirley."

"What is your sister's name?"

"Which sister?"

"How many sisters do you have?"

"Two."

"What are their names?"

"Paula and Sandy."

"What is your brother's name?"

"How do you know I have a brother?"

After faltering for a second he continues, "You don't have a brother?"

His attention then immediately shifts to the person who entered the room after me, and the same questioning routine begins again.

I am at a national conference on autism. Walter, a man perhaps in his mid-twenties, draws my attention. He claps loudly when anyone is introduced, and as he does so his mouth opens, his head moves from side to side, and his eyes appear to focus at a point near the ceiling. Walter and his mother are sitting only a few feet from the bluegrass band that is to play at the conference reception. As soon as the loud and lively music starts, Waiter's hands begin to twist rapidly in arcs before him, the right one clockwise, the left counterclockwise. He keeps clasping his hands together, whether to stop their movement or to clap I don't know, but his hands keep breaking loose. His head turns faster and faster, keeping time with both his hands and the music. When the music ends, Walter's movements slow to a stop. He looks at the ceiling briefly and then sits quietly.

A woman who has a Ph.D. is making a presentation: Temple Grandin has written two books about herself as well as numerous articles on autism. She is also the subject of an intensive case study in the book An Anthropologist on Mars by the neurologist Oliver Sacks. Temple Grandin is a person with autism.

We glimpse here a few of the many faces of autism. One of the most striking aspects of the condition (or conditions) labeled "autism" is its variability. What then do people called autistic have in common? What does that term autism mean if it encompasses such heterogeneity? What is the concept behind the label? To answer this question we need to look across several perspectivesb those of researchers, clinicians, parents, and adults with autism. We can begin by studying the "bible" of diagnostic categories and labels, the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), now in its fourth edition.

Autism is classified by DSM-IV as a pervasive developmental disorder, a term meant to indicate "severe and pervasive impairment in several areas of development: reciprocal social interaction skills, com-

munication skills, or the presence of stereotyped behavior, interests, and activities" (APA 1994, 65). Let's look at what autism may mean through examples provided by parents.

Qualitative impairment in social interaction . Catherine Maurice describes the social isolation of her infant daughter.

Anne-Marie was not shy: she was largely oblivious to people, and would sometimes actually avoid them, including, a lot of the time, her own mother. She drifted toward solitary spaces: the corners of a room, behind the curtains, behind the armchair. If I was somewhere else in the apartment, she never sought me out. . . .

Worst of all, perhaps, was the lack of that primary connection: the sweet steady gazing into one's eyes that we began to see all around us in other toddlers. . . . Sometimes I would catch her gazing in my direction and would start up, eager to respond to her invitation, to meet her look. But her eyes, frighteningly, were focused upon some middle distance, somewhere between me and the wall behind me. She wasn't seeing me at all. She was looking right through me! (Maurice 1993, 31, 33)

Qualitative impairments in communication . Craig Schulze tells us about his son's speech without communication.

I then enter the room carrying Jordan's dinner. "Put it on the table," he blurts out when he sees his food. It's a remark he's been making four times a day (during meal times and his snack) for over two weeks. He doesn't seem to really care where I put the food since he darts away from me the minute I'm in the room. Like so many of his most recent utterances, this habitual response seems more a ritual than an attempt at communication. It's spoken in a loud monotone with almost no emotion. (Schulze 1993, 105)

Clara Park describes her daughter's language at age two and then at age twenty-three. At age two her daughter used words, but infrequently and not to communicate. "She had no idea of language as a tool that could cause things to happen" 1982, 74). At age twenty-three,

Anybody who hears Jessy speak more than a word or two realizes that something is wrong. She has learned English as a foreign tongue, though far more slowly, and she still speaks it as a stranger. The more

excited she is about what she has to say, the more her speech deteriorates; her attention cannot stretch to cover both what she is saying and how she is saying it. Pronouns get scrambled: "you" for "I," "she" for "he," "they" for "we." Articles and tenses are confused or disappear, verbs lose their inflections or are omitted altogether. (Park 1982, 292)

Restricted repetitive and stereotyped patterns of behavior, interests, and activities . "We watched him as he rocked his body and spun every round object he could find," writes Barry Kaufman in describing his not yet two-year-old son's repetitive behavior (1976, 62). Judy Barron writes of her infant son:

He was drawn to odd things. He'd crawl past a brightly colored selection of toys to get to the furnace register. Once there he would stick his fingers into the slots and watch his fingers move. There was a hole in the wooden floor of his bedroom that riveted his attention. He'd put his finger into that and wiggle it around for hours. (Barron and Barron 1992, 13)

Six-year-old Paul McDonnell became obsessed with light bulbs, his mother, Jane, wrote.

His light bulb collection had grown to include not only incandescent household light bulbs, but also fluorescent bulbs, black lights, infrared and ultraviolet bulbs, and flashcubes: three hundred seventy-two in all. He kept many of his light bulbs in a basket by his bed, and every night he tried out different bulbs. (McDonnell 1993, 154)

As an adolescent Temple Grandin became fixated on squeeze chutes for cattle, an obsession that she later transformed into a therapeutic device to calm herself and others.

All autistic children do not act exactly like the children described above....