Excerpted from Chapter 1 of Making Sense of Autism, by Travis Thompson, Ph.D.
Copyright © 2007 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
OUGHTISM: UNDERSTANDING CHILDREN WITH AUTISM SPECTRUM DISORDERS
The most important thing that parents, teachers, and other caregivers can do to help a child with autism develop is to try to see the world through the child's eyes. For children with ASDs, very little in the world around them is the way it ought to be. Taking time to gain an appreciation for the way your child, client, or student sees the world is invaluable in understanding their often puzzling behavior and more rationally developing educational, medical, and other intervention plans. Some days it may seem that children with ASDs wake up in the morning wondering what they can do to drive their parents and teachers crazy. In reality, children with ASDs are doing their best to make their world understandable, predictable, and tolerable—the way it ought to be (at least from their perspective). Our job is to figure out how to make their world more manageable by understanding why they are doing what they're doing and teaching them more effective ways of overcoming the problems they encounter. The world is very confusing and at times scary for children and youth with ASDs. They don't understand what people say to them and the meaning behind people's actions. They don't understand what will occur, in which order it will occur, or when it will occur. The most fundamental problem each person with autism faces is how to gain control over a disorderly world. They need their environment to be predicable. When a child with an ASD screams, cries, has tantrums, or slaps his or her own face, it is often intended to make his or her parents stop making demands. Children with autism don't understand what is being said to them and they fear that it involves some change they are unable to tolerate. If a daily routine is changed, their aggression is intended to make their parents restore it the way it ought to be—from their perspective.
Many parents and teachers feel that they are losing control of the situation if they are unable to insist that the child with an ASD obey them—usually immediately. Ordering the child to do things, or not do things, and expecting prompt compliance will inevitably result in frustration for everyone involved and, very likely, a fracas. Each successive altercation over "who's in control here" will make matters worse.
One of the more effective ways to gain control over the behavior of a child with an ASD is often to relinquish some control over things that matter greatly to the child and are relatively unimportant to you. By teaching a child legitimate ways of controlling his or her world, even if some of the things that seem important to them don't make much sense to you, the child will feel more secure. He or she will no longer need to throw a tantrum, hit or bite, or otherwise harm him– or herself to make the world change. By providing the child with ways of gaining some control over the timing of when things are done and some details of how they are done, and giving them appropriate ways to communicate their need to leave disturbing situations, parents, teachers, therapists, and other caregivers, you will gain the child's trust and in the long run have a more loving and effective relationship with the child.
Searching for Help
When I first met Ross and Beth nearly 40 years ago, very little was known about autism. They wondered what was wrong with Matt. Beth spent hours poring over her pregnancy with Matt, almost day by day, to see if she had taken medicine she shouldn't have or was exposed to an unknown toxin that might have caused Matt's condition. Matt's pediatrician referred Matt's parents to a child psychiatrist, who expressed special interest in his parents' sex life and asked probing questions about whether Matt had been planned or was the result of an unwanted pregnancy. They were angry and humiliated by his questions but most of all felt a growing sense of hopelessness. Matt was taken to a pediatric neurologist who said that Matt had mental retardation and there wasn't much that could be done for him. A university clinical psychologist was the first to mention autism to Matt's parents. The psychologist said there wasn't very much known about autism at that time, but that perhaps I could help them. That was shortly after Ross and Beth had reluctantly placed Matt in a state–operated institution for people with mental retardation. Matt lived in a newer building for children and adolescents called a Learning Center. At the time, Ross made a promise to himself and Beth: "We'll do whatever is necessary to bring Matt home from that place."
Matt's parents and I visited him in his residence, a one–story building on the outskirts of a small town, 21/2 hours north of his home—an encounter that was terribly difficult for Matt's parents. Matt, who was 6 years old, had scratches and bruises on his hands and arms and a large bruise on his knee, the result, the staff said, of falling during an attempt to climb on top of furniture. Matt approached his parents without looking directly at them, flicking his fingers in front of his eyes, and moving his head strangely from side to side. He made no attempt to talk with them nor did he attempt to take their hands or otherwise interact with them. His mother put her arm around him, but Matt turned away, seemingly indifferent to his mother's gesture. The staff clearly liked Matt and tried to reassure his parents about how well he was doing. As she wiped tears from her eyes, Beth pleaded, "What can we do, my God, what can we do? There must be something better than this. Is there no way to help Matt?"
Matt appeared utterly frustrated about something, but what? His activity level was phenomenal. He never stopped moving. He climbed on, under, and over furniture. He picked up toys and puzzle pieces, skillfully twirling them like a juggler, often glancing in another direction as he did so. He appeared to want something, but what? One almost had the impression that he was trying to make sense out of an incomprehensible situation. He picked up puzzle pieces and sniffed them instead of looking at them. Instead of looking directly at objects, he tilted his head to one side and seemed to study them out of the corner of his eye. At other times staff members attempted to encourage Matt to participate in a game or activity, but Matt turned away abruptly with what appeared to be an angry expression on his face. At one point when a staff member was particularly persistent, Matt began slapping his own face, harder and harder until someone restrained him, saying "No, Matt, no hitting." Matt's mother left the room when she heard the first slap.
Early the following Friday morning, Matt's parents drove the 130 miles to pick him up from the state–operated residence and bring him home for the weekend. I met them at their house and noticed that Matt seemed calmer than he had been at the institution but difficult to engage. He showed no reaction when spoken to and walked aimlessly from room to room, stopping to stare out the window. I held out two of his favorite snacks, M&Ms and sugarcoated cereal. He studied them briefly and then snatched some cereal and ran away to consume it. He must have learned that habit in the institution in which food theft by peers was common. He returned within a few minutes and this time looked more carefully at the two snacks, different items in each hand. He selected one and immediately put it in his mouth. I said, "Good job, Matt." He showed no reaction to my comment. When Matt returned, I closed both of my hands concealing the snack items in each. This time he grabbed one hand and turned it over. As I opened my hand, he studied three Cracker Jacks and then grabbed the other hand, prying it open. It contained M&Ms. Matt grabbed the pieces of candy and placed them his mouth and walked away more slowly, making a humming sound. After a few minutes he returned and seemed to be looking for something—my hands. I held my hands behind my back. "Want a treat, Matt?" I asked. He tried to pull my hand from behind my back. I placed both hands in front of him, each enclosing a snack. "What do you want, Matt?" He touched my hand and I immediately turned it over revealing two M&Ms. He quickly picked them up, this time very deftly with one finger and his thumb. His fine motor dexterity was impressive. I continued holding out the other hand enclosing another treat. "What do you want, Matt?" I asked. He touched my hand, and I immediately turned it over so he could retrieve several Cracker Jacks. "Good job, Matt," I said. He glanced up at me briefly, expressionless, and walked away.
We took a short break and I suggested to Matt's mother that she cut out the logo from the front of the cereal box and the M&M logo from the candy container and paste them on two pieces of cardboard. I placed them on the table in front of Matt and held my hands above each card. The left hand containing two M&Ms was above the M&M card, and the right hand containing several pieces of cereal was above the logo of the cereal. "What do you want, Matt?" I asked. He touched my hand containing the cereal and I promptly opened it. He shoved it away seemingly in irritation and immediately grabbed the other hand. He retrieved the M&Ms and ate them. Matt had clear preferences. I pointed to both cards and said, "What do you want, Matt?" He looked puzzled at first and made an odd sound, similar to the rising inflection when asking a question. Then he touched the M&M card and I opened my hand containing the M&M. He was catching on to the idea that a picture could represent something he wanted. Matt understood what I meant when I asked, "What do you want?" and he used a simple gesture of pointing at the picture to say, "I want M&Ms." That was the beginning of Matt's communication.
Soon, instead of providing edible rewards, we showed Matt pictures of items or activities he might like and asked the same question, "What do you want, Matt?" When he pointed to the picture, he was tickled, given his favorite toy, or his favorite song was turned on so he could hear it, depending on the picture to which he pointed. After several hours practicing making requests by touching a picture of what he wanted, I left, suggesting to Matt's parents that they continue to work on using pictures to communicate with Matt for the rest of the weekend. On Sunday afternoon, Matt was returned to the institution for another week, which to Beth and Ross seemed an eternity.
I called the following Monday, and Beth reported that early Sunday morning, Matt had had a terrible tantrum and bit his father's hand. Matt had apparently wanted something but there was no picture that represented it. When they were unable to figure out what he wanted, he became increasingly angry—screaming, throwing things, and finally biting his father. "I don't know if we can do this, Travis," Matt's mother said. "Ross has a lot of trouble keeping his cool when Matt acts like that, and I can't blame him."
That Monday evening I had coffee with them at their home and we discussed the incident. "Just when I thought we were making progress, everything fell apart," Ross said. "It must be terribly frustrating," I replied. Actually, Matt was doing much better, despite the tantrum and outburst. It was just that he thought his parents ought to understand what he wanted, now that they were beginning to communicate with him. The problem was that there was no symbol that represented what he wanted. Over the coming weeks, we worked together to teach Matt new skills that were useful at home and improved his communication. By trial and error his parents developed an inventory of activities and items he most often wanted and created picture cards representing each. Later his picture menu included going swimming at the YMCA, going with his mother to the library, playing a game with his sister, and various community activities. Eventually, he used a communication board with pictures of the 8&8211;10 items or activities he most often requested. Matt's frustration was clearly fading, and his interest in his family was increasing.
At times Matt brought his picture card menu to his mother with a disturbed expression on his face. He waved the card in agitation and made a very unhappy sound, half a cry and half an angry growl. That was our clue that what he wanted wasn't on the picture menu. That was when Matt's parents came up with the idea of asking him to point at what he wanted. He led them to the room in which the item he wanted was located (in the kitchen) and pointed with a sweep of his hand toward cupboards above the refrigerator. His mother climbed on a stool and opened the cabinet doors and Matt very animatedly pointed at the bag of popcorn seeds. Though it was only 9 A.M., his mother popped popcorn for Matt. As they sat together at the kitchen table, Beth rubbed Matt's arm as he wolfed down the popcorn. Matt had begun to smile at his parents, which was one of those special occasions Beth would always remember.
After 2 months of weekend visits, Matt came home for good. We had used each weekend visit to practice new skills and conduct refreshers on those previously acquired. Ross and Beth were becoming more confident that they could help Matt learn and manage his behavior problems. They had previously lost confidence in their ability to parent Matt. Over the next year Matt continued to make progress, but gains alternated with periods of turmoil and disappointment. Matt liked to help his mother prepare dinner, and she allowed him to stir melting butter into hot peas and pour milk or juice. Matt was fascinated by shining objects or surfaces and twirled his mother's keys and balanced a spoon on its handle and made it spin. His skill at spinning things without them falling over was uncanny. Beth had to watch Matt closely to prevent him from burning himself when she was cooking because he liked to lean over boiling water or a sizzling frying pan and watch the bubbles dance on the surface.
During one of my visits to their home, Beth asked me if it were true that children with autism don't bond with their mothers, as she had read in an article in a magazine. Before I could answer, Ross interjected, "Watch this," and Beth shouted upstairs, "Matt, it's time for bed." Matt came bounding down the stairs, two steps at a time, and plopped himself down beside his mother on the sofa. She opened a children's book and began reading. With her first words, he leaned his head against her shoulder and she put her arm around him. He flicked a puzzle piece in his hands, but listened attentively at the same time. The words in the book were more complicated than he could fully understand, but the act of reading with the rising and falling intonation of Beth's voice and the vibrations from her body as she read seemed comforting to Matt. It was a remarkably affectionate scene, reminiscent of the comfort a newborn infant receives from hearing his or her mother's heartbeat while being held at her breast. When Beth reached the last page and closed the book, Matt jumped down off the sofa as if a starter's gun had sounded and ran upstairs to his bedroom. "I guess that answers the question about whether children with autism bond with their mothers," I said. Beth beamed as she walked upstairs to tuck Matt in.
Matt grew up at home as a member of his family. He attended special education classes for students with severe disabilities, and when he left school, he worked in a sheltered workshop. His life at home was often uneventful, but periodically his behavior worsened. Whether due to physical illness or other changes in his life, Matt occasionally became aggressive. He was treated with psychotherapeutic medications and his parents received periodic consultation from a behavior therapist. When Matt reached his early 20s, he moved into a group home with several other young men with autism and group–home parents who helped guide the young men, assuring their safety and well–being. Matt regularly participated in community activities such as swimming at the YMCA, going on outings to the zoo, and fishing with his father. In some respects, Matt had a surprisingly typical life despite his severe disability.
Matt initially had no idea how to interact with people or how to communicate. He engaged in rigid, highly repetitive behavior, like rocking or flicking his fingers in front of his eyes. If anyone interrupted his repetitive movements he had a tantrum. Not all children with autism are as severely affected as Matt. Some children repeat words or phrases, enjoy being held by their parents, and are rigid in more subtle ways. Many have preferred daily routines and become upset if they are changed. Others begin talking at the same age as their brothers and sisters begin talking, but they have a limited understanding of how language functions even though they are able to produce words. Because of this collection of similar symptoms and signs, which vary greatly in intensity from child to child, autism is called a syndrome.
The primary focus of this book is on younger children with ASDs, those from 2 to 6 or 7 years of age, the period of greatest developmental malleability. Later sections of the book address mental health problems often seen in elementary– and middle–school–age children with ASDs, as well as autism seen in other neurodevelopmental disorders. The goal is to integrate what is known about the neurobiology of autism with behavioral, educational, and pharmacological interventions. This is not a cookbook. It does not prescribe specific techniques or procedures; rather, it examines principles underlying those procedures and practices.