Read an Excerpt
A Mind Apart
Understanding Children with Autism and Asperger Syndrome
By Peter Szatmari
The Guilford Press Copyright © 2004 Peter Szatmari
All rights reserved.
The Eccentric Entomologist
I sit and watch Stephen play in the afternoon sun outside my window. He is nine years old. I have not seen him for some time, and I'm surprised at how much he's grown. It's a warm day in December, but it feels more like spring as an early snowfall melts on the lawn. I work at an old hospital that used to be a tuberculosis sanatorium, and the maintenance staff are putting up the Christmas lights on a very tall pine tree, as they have done every December for many years. Stephen runs around the path in circles, paying no attention to the lights going up. His mother keeps a slightly anxious eye on him, as do the gentlemen working on the tree. When it's time for me to greet him, he clumps up the stairs, too heavily for so slight a boy. He announces in a loud voice, "I catch wasps!"
"Do you?" I reply, feeling rather taken aback. "That must be dangerous."
But he does not answer. He has a messy crop of blonde hair as well as lots of freckles, and he darts around my office almost like a bird, checking out the toys, the books, and the papers on my crowded desk.
He casts an anxious eye back at me and says, "I don't want to grow up!"
I nod sympathetically and try to inquire why, but again he does not answer. He would rather talk about wasps, which are his passion. He tells me all about the different kinds of wasps that exist in the world, how he has them encased in epoxy at home and how mad they get when he captures them.
"Why do you like wasps so much?" I ask.
"I like the sound they make and how their legs hang when they fly."
How their legs hang? I have never noticed the legs of a wasp, when they fly or otherwise. What is there to like about the sound and their legs?
* * *
What indeed? This book is about people with autism, Asperger syndrome (AS), and pervasive developmental disorder not otherwise specified (PDDNOS), three common and important forms of autism spectrum disorder (ASD). It is about the sound wasps make and how their legs hang in the air when they fly. Children and adults with ASD have behaviors that professionals characterize as obsessions, preoccupations, rituals, resistance to change, and self-stimulation. But instead parents might see a young boy with an excessive fascination with wasps, a child who insists on keeping all the doors on the second floor of her house open (even the one to her parents' bedroom), or a boy who gets terribly upset if the blanket on his bed is changed or the wrong cup is placed by his plate at breakfast. People with these types of disorder also typically have trouble communicating with adults and children and experience difficulties with relationships in general. In conversation, they may go off on tangents, ask the same question over and over again, even if they know the answer, or talk only about wasps or their particular, often rather eccentric, passion. Parents and other family members know that these are the often debilitating symptoms of a terrible disorder that strikes at the heart of childhood. A thousand times every day, parents feel as if they will never understand what goes on in the mind of their child, that they will never find a common ground with other people who do not have a child with one of these disorders. The simple task of shopping for groceries can become a nightmare as perfect strangers stare at them and pass judgment on their parenting skills.
In this book, I hope to convey to parents and professionals another context: how the world is perceived by children with ASD. In turn, I hope this will change our perception of the children themselves. Behaviors like Stephen's can also be seen as passions that teach us about the world and how it looks and sounds. By unraveling one mystery, I hope to reveal another, more fundamental, one. And that is that children and adults with ASD live in a concrete world, palpable and immediate, a world without metaphors. Theirs is a world of detail and of infinite variety. It is a visual world built of images, not language. Feelings, emotions, and personal relationships do not have the same value for them as they do for us and for other, typical, children. It can be terrifying and confusing to live in such a world, and it is true that the opportunities for growth and development are often limiting. But the way these children perceive the world can change and transform the way we see the world and make it a more magical place, full of wonder and variety. Children with ASD can teach us about the infinite variety of sameness, and, in seeing their diversity, we realize that there is a sameness to us all. Once we appreciate this, our attempts to help children with ASD accommodate to our world can be more successful and perhaps accomplished without the loss of their special gifts.
* * *
Stephen has been interested in wasps for several years. This is not just a passing fancy or a hobby that he finds amusing or that fills in the time between episodes of his favorite TV shows. He is obsessed with wasps, passionate about them. He talks about them all the time, with his teachers, his parents, and grandparents, even with complete strangers. If people show little interest, he chatters on, unaware of the boredom or frustration experienced by his listener. In the summer, he only wants to go to the park or the garden center to chase wasps around the plants and bushes and try to catch them. If, for some reason, his parents cannot take him there, he becomes very upset. Of course it's difficult for him to have a friend over to play since other children are afraid of wasps and do not want to be stung. Stephen has been bitten several times, but this in no way diminishes his enthusiasm. He catches wasps in a bottle and then releases them in his bedroom and enjoys watching them fly around the room, listening to the sound their legs make as they fly through the air, as I now learn. During winter, when the wasps go into hibernation, he spends hours in his room, poring over his collection of wasps encased in epoxy.
At first Stephen's parents were completely bewildered by his interest in wasps and not a little upset. After all, nine-year-old boys should be interested in sports, in toys that shoot and dart about. How could anybody find wasps enchanting? But now they find Stephen's interest charming. They too have acquired a detailed knowledge of the wasp's habits and lifespan. The four of us sit and talk about wasps as if we are all entomologists attending some esoteric conference about the mating habits of the yellow jacket. Stephen's disability has transformed us all; me for a moment, his parents for a lifetime.
In many respects, Stephen's story is quite typical for a child with autism. His parents first became concerned with his development when he reached age one and was not yet crawling. They also noticed that, compared to his older sister, Stephen was very clingy and could amuse himself for long periods of time by making humming noises. His parents took him to see a pediatrician, and this led to several assessments that finally, at age three, produced a diagnosis of autism. The time between that first visit to the pediatrician and the official diagnosis was very stressful for the family, and they became increasingly alarmed about Stephen's development. Living without a diagnosis was very difficult. In such circumstances parents tend to blame themselves for their child's delays in development, and these recriminations become ever more strident, as the time taken to arrive at an answer lengthens.
When I saw him at three years, Stephen spoke a few words but used them only occasionally to label objects. More often, he would yell, cry, or protest. He did not compensate for his lack of speech by pointing at things, gesturing, or nodding and shaking his head to indicate "yes" or "no." Although, for the most part, he seemed to be happy, he would not smile back at his parents when they smiled at him. When his father came home from work, Stephen would not run to the door to greet him but would jump up and down and flap his arms instead. He would not hug or kiss his parents and did not enjoy cuddling. He tolerated being held by them but generally did not reciprocate their affection. He would often run his hands through his mother's hair and then sniff them. In general, he would not ask his parents to join his play activities and did not direct their attention to toys with which he was playing. If he hurt himself, he would not come for comfort and would not offer comfort to his older sister if he saw that she was crying.
He loved to play with balls, though. He would spin them, throw them, bounce them off the ground, and line them up. He liked to carry a globe around with him all the time so that he could look through the hole from one end to the other. He also enjoyed watching water go down the toilet and playing with cars, but only if they went around in circles. He became particularly excited if the antennae wobbled. He also loved to watch ants travel across the pavement and to drop sand on his balloons or pour water over them. Even though he experienced considerable pleasure from these activities, he would not share his enjoyment with others; he would not have his parents come and watch him move the cars or have them look at how happy he was. He would play with other children, but only if the games involved balls or playing tag. Left to his own devices, he would usually play with a ball, wiggle the antennae on toy cars, or lie happily in bed making humming noises to himself.
Stephen had one ritual, and that was to insist that his parents give him a hug before he entered the kitchen for breakfast. If for some reason this was not possible, he would become very upset and could not be comforted or reassured. He would also become distraught if one of his balloons made a loud noise when the air escaped. He was particularly afraid of the balloon flying around the room.
At age three Stephen began to attend a community school four mornings a week. There, he had an opportunity to be with typical children in a structured situation and with a special teacher who worked with him very closely. She had experience in working with children with ASD and was aware of the many strategies that are effective in promoting social interaction and communication. (Sources of information on such strategies are listed at the back of this book and are referred to throughout the book.) A year later, he was talking in short sentences and even asking questions. He now enjoyed being with the other children and would even initiate some rough-and-tumble play with them, although very little of his play consisted of sharing or turn taking. There was also still no evidence of pretend play with his cars or action figures, and he started to flap his arms and walk on his toes when excited. He continued to be fascinated by water and by balloons, but now he added an interest in the moon and in vacuum cleaners to his list of fascinations.
Obviously, Stephen's interest in wasps was just one of a long line of special interests and preoccupations. The first consisted of very simple visual stimuli: water going down the toilet, looking through holes, dropping sand, wobbling antennae, and bouncing balls. As he matured, the interests become more complex (the moon, vacuum cleaners, and wasps), but all shared the quality of variation in shape, movement, color, and pattern. Sometimes the visual stimuli were accompanied by sounds—simple humming noises and the sounds wasps make when they fly. Shapes, movement, patterns, and sounds never lost their immediacy and their magnetic appeal for him. Stephen, it seemed, had a gift for not being easily bored by the simple things of life.
* * *
Many people think of the child with autism as someone who is totally mute, completely self-absorbed, and who sits in a corner and rocks all day. Other common misperceptions are that people with autism are extremely violent and aggressive, capable of the most horrific forms of self-mutilation, such as gouging out their eyes or banging their heads. Stephen shows none of these behaviors or attributes; he is talkative and gentle, and he is engaged in the world, except he sees the world from his own perspective. He is completely endearing and charming in an eccentric way. The child with autism as popularized by the media and television shows is nowadays quite rare. Such individuals were much more common when disabled children were removed from their homes and placed in large institutions with little stimulation or opportunities for useful activities and social interaction.
There is, in fact, enormous variety in how autism presents in individual children. While it's true that many people with autism are not capable of functionally useful language, a substantial proportion, perhaps more than fifty percent, are able to use language, at least to have their essential needs met. It is also true that the vast majority of children with autism do interact socially with other children and with adults but do so in a limited, unusual, or fixed fashion. It is the quality of their social interaction that sets children with autism apart from other individuals, not whether they do or do not interact. There is also enormous variation in their cognitive abilities. Some children with autism are able to perform only rudimentary arithmetical operations, and some will never learn to read. Others, however, are able to perform the most astonishing mathematical calculations, or are able to identify the day of the week on which any individual is born in any year. And some have an amazing capacity to read at an early age or have an encyclopedic knowledge of specific topics.
In spite of this enormous diversity, there are three key features that characterize all children with autism, AS, and PDDNOS. These are impairments in reciprocal social interaction, impairments in verbal and nonverbal communication, and a preference for repetitive, solitary, and stereotyped interests or activities. In other words, children and adults with any form of ASD demonstrate a difficulty (1) in building social relationships and (2) in communicating through words, gestures, and facial expression, and they all (3) spend their spare time doing puzzles, watching things, collecting things, or being fascinated with shiny objects or specific topics and the like. These three general characteristics make up the autistic triad as articulated first by Lorna Wing, and the triad underlies the astonishing number of behaviors that a child with autism may show at one time or another. It is also important to appreciate, as illustrated by Stephen's story, that the symptoms and behaviors vary with the developmental level and age of the individual and can change dramatically over time. But these changes are usually a variation on the theme already contained in the notion of the autistic triad.
For parents, it's the impairments in social reciprocity that most clearly define the predicament of the child and family. The simplest social interactions between parent and child and between siblings, which other families may take for granted, can be extremely difficult for a child with ASD. The rapid building of satisfying relationships, often the most natural thing in the world for most families, becomes instead an arduous task for families where a child has autism. Many of the children limit their social overtures to those required to get their personal needs met, such as asking for help with a toy or getting food from the fridge. The children who do approach their parents for more intricate social interaction often do so for physical games such as tickling, wrestling, and tag, which are enjoyed not so much for the social enjoyment as for the physical sensations these activities evoke. Other children with autism show too much social initiative, acting overly friendly with strangers or hugging other children or adults when it's inappropriate. When they do make friends, play activities are often limited to those that fascinate the child with autism, whether it's playing with computer games, watching TV, or setting up scenarios with action figures. Parents may point to these relationships as a sign that their child's social impairment is not all that bad. But it's important to understand that even if the child likes to wrestle with his big brother and will play with miniature cars for hours on end with the little boy next door, the social world does not have the same value and meaning for the child with autism as it does for other, typically developing children, and this difference will affect other areas of the child's life as he grows up. For typical children, social praise, subtle threats such as raising an eyebrow or using a firm tone of voice, and social approbation are powerful learning tools precisely because social interaction holds such high value for them. For the child with ASD, the value of social interaction does not carry the same weight or meaning. As the children mature, these impairments in understanding social interaction evolve into difficulties with empathy and understanding the motivations, beliefs, and feelings of others and themselves. They lack a theory, or an intuitive understanding, of other people's minds and of their own minds. For example, it might be all right for a child with AS to run his fingers through his mother's hair, but it would be quite inappropriate to do that to a complete stranger in the grocery store. No doubt the stranger would be mortified, but the child with AS might not have a clue how that person would feel. Teenagers with AS have a terrible time in high school as they try desperately to understand the ins and outs of dating. The idea that first you have to be "friends" with a girl before she can be a "girlfriend" is often too much for them. It is the subtlety of language and social nuance that proves elusive and confounds their attempts at making deep and meaningful friendships based on mutual understanding.
Excerpted from A Mind Apart by Peter Szatmari. Copyright © 2004 Peter Szatmari. Excerpted by permission of The Guilford Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.