CHAPTER 1
Scene One
Autism: Studying the Script
If you are a teacher, you probably already know something about autism spectrum disorder (ASD). By now, pretty much everyone has heard of autism, and a lot of us think we know something about it.
People may picture Rain Man, or Temple Grandin, or they may imagine a quirky billionaire computer genius, or a silent child rocking in a corner, flapping his hands and staring at the wall. Some may think of a nephew or niece, a neighbor, a student, a stranger seen in a supermarket, or a son or daughter. But how much do we really understand about the autism spectrum, and the wide range of people whose lives it touches? Let's pick up the script and get started, so we can set the stage for our students' success.
What Autism Isn't, and What It Is
Autism is not a disease. It cannot be diagnosed with a blood test or brain scan. It cannot be "caught" like a cold, and it cannot be prevented. (This doesn't mean we can't work with a child to learn the skills needed to cope and succeed in a neurotypical world. We can, and we do.)
Autism is not a parenting problem. It is not learned, it is no one's fault, and there is no one to blame.
It's not true that all children with autism avoid eye contact, or that anyone who makes eye contact must not have autism. There is no one single behavior whose presence or absence confirms or rules out autism.
As a teacher, don't dismiss ASD behaviors as being somehow a product of the home environment. Autism is not caused by poor parenting skills. It's not caused by poor teaching skills, either, but there are skills that both parents and teachers can practice to help students with autism learn and achieve.
Autism is not a discipline or behavior problem. Taking away his recess, sending him to the office, or suspending him from school will not cure autism, either. This does not mean that challenging behaviors cannot be changed. Many strategies and interventions based on the science of applied behavior analysis (ABA) are effective in making important behavior changes; but not withholding recess.
There are a lot of things that autism isn't, but what exactly is autism?
Autism is a neurobiological developmental condition. It is a combination of characteristics or behaviors. It's called autism spectrum disorder because of the wide range, or spectrum of characteristics, levels of severity, and manifestations.
Each person on the autism spectrum is unique. There are many traits or characteristics associated with the spectrum, and your student may have any number of them, in many different combinations, at varying levels of intensity.
Symptoms may significantly interfere with learning one day, but not at all the next day. This doesn't mean the student was faking the symptoms, only that symptom severity, and ability to cope, can change from day to day.
Some students are only minimally affected by autism. These students may require some level of support at times in their lives, but they may have the potential for complete independence. This includes those who, in the past, have been identified with Asperger's disorder, also called Asperger's syndrome, which is no longer a separate diagnosis in the USA.
Other students are more significantly affected or exhibit a greater number of autism behaviors and characteristics, often combined with intellectual disability (ID). They may need substantial lifelong support.
There is a lot we don't know yet about autism. We don't know enough about the causes, but we do know it is not caused by vaccines or immunizations. Unfortunately, this rumor lives on despite many, many research studies that show zero correlation. The fact that some children with autism do not show symptoms until they are toddlers, around the time they receive vaccinations, helps fuel the fire, but there is no evidence supporting a link between autism and immunizations.
We know there is no cure.
But scientists are studying, doing research, and learning more and more every day about this complex and fascinating condition called autism.
We know our students did not choose to have autism, and they cannot choose to become neurotypical (or NT — not on the spectrum). While they may learn to control unwanted behaviors associated with autism (and we hope they do, with our help), they will not "grow out of it." Autism is, and will continue to be, a big part of their lives. It's a big part of the lives of the people who love them, care for them, and teach them, too.
But autism is not the only thing that makes them who they are. As Stephen Shore has said (and many have quoted), "If you've met one person with autism, you've met one person with autism."
Our students on the spectrum deserve the same educational opportunities that their neurotypical peers have, but sometimes their behaviors get in the way of their own success. We can help them master their own behaviors so they can perform at their best in our classrooms. Then we can help them take their show on the road: into their homes, other classrooms, communities, and the world after school.
But first, we need to learn more about autism.
Characteristics of Autism
The presence or absence of a number of symptoms of autism give us the diagnosis. There are two ways of identifying autism. A child may have a clinical or medical diagnosis from a clinical psychologist, psychiatrist, neurologist, or other qualified, licensed professional. In the USA, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) is used to help professionals identify or rule out a range of disorders, including autism spectrum disorder. Within the school system in the United States, a student may be identified as meeting eligibility criteria as a student with autism under the Code of Federal Regulations (CFR) for special education, usually after evaluation by a school psychologist.
Clinical Diagnosis Using DSM-5
The DSM-5 identifies two major areas of deficit associated with autism spectrum disorder (ASD):
• social communication and interaction
• restricted, repetitive patterns of behavior, interests or activities
There are only two, but these two characteristics affect a person's life in many significant ways.
Communication, for example, includes both verbal communication — talking — and nonverbal communication such as gestures, signs, facial expressions, or eye contact. It includes expressive communication, such as speaking, writing, or using signs, gestures, or other nonverbal communication so that other people can understand them. It also includes receptive communication, such as listening, reading, or understanding and interpreting other's speech, signs, gestures, facial expressions, and tone.
Not only are all of these communication challenges part of the autism spectrum, but social interaction is also included in this single major characteristic.
Social communication is not just being able to respond when someone makes a social approach ("Do you want to play with us?"), but it is also being able to initiate socially ("Can I play with you?"). It is not only the ability to carry on a back-and-forth conversation, but being able to relate to someone else's topic of conversation rather than changing the subject and lecturing on their own favorite topic. Interaction is not just making eye contact and smiling on one's own terms, but responding to other's attempts to make contact, demonstrating social-emotional reciprocity. When your students engage in conversation, share their excitement when something good happens to a friend, commiserate and comfort a friend who is hurt or upset, or cooperate to play a game or work on a group project, they are using social-emotional reciprocity. Your students on the spectrum may not engage in the typical social chat about their weekends, or show their empathy when a friend is hurt or upset. This doesn't mean they don't feel empathy — they often feel very deeply for others, but are at a loss as to what to do or how to express their feelings.
Social communication is also noticing and paying attention to what other people are noticing and paying attention to, or joint attention. When a preschooler points to a picture of his favorite TV character and looks back and forth between your eyes and the picture to make sure you see what he's pointing at, he is initiating joint attention. When your students follow along in group discussions or look at the illustrations of the book you are showing to the class, they are engaging in joint attention. Your students with autism may not look at what their classmates are pointing at, or they may not follow along in back-and-forth conversations.
Another aspect of social communication is sharing enjoyment. At school, students share enjoyment when they tell a friend about their weekend or show them a new game or book. Another way of sharing enjoyment is showing interest in their friend's weekend or the book or toy their friend shows them. Any time you say something like "what a beautiful sunset!", you are sharing your enjoyment with the people around you. In contrast, your student with autism may never show their classmates a picture they drew, or call others over to see when they have found an unusual leaf or insect on the playground.
Then there's the restricted, repetitive patterns of behavior, interests, or activities. For some, restricted interests can get in the way of learning. Perhaps a student only wants to read books about astronomy, draw pictures of stars and moons, and lecture her classmates at length on her rationale for keeping Pluto as a planet. The only math problems she will do are word problems that include astronomy-related themes. (If solar system "A" has nine planets, and solar system "B" has five planets, how many planets are there in both solar systems?) If she won't listen to stories on other topics or participate in classroom activities that are astronomy-free, her education may suffer. The same is true for the boy who loves only trains, or the one who is constantly replaying his favorite movie in his head, line for line, and doesn't notice what is going on in the classroom.
Repetitive actions, mannerisms, or unusual behaviors can set a child apart from other children. One child walks around the perimeter of the playground staring at her feet throughout every recess. Another flaps his hands and bounces up and down when he is excited, such as when the answer to a math problem is a palindrome ("494! It's the same frontwards and backwards!"). These behaviors are different, or unexpected. Their classmates may think they act "weird" or "crazy." When our ASD students display unusual behaviors in addition to weakness in social interaction, they are often left isolated and alone in class, on the playground, or in the cafeteria.
Educational Eligibility Using CFR Criteria
While similar to the DSM-5, the special education Code of Federal Regulations (CFR) defines autism as it relates to a school setting to determine if a student may be eligible for special education services. According to the Individuals with Disabilities Education Act (IDEA):
Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child's educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.
These are the characteristics that are evaluated by a school psychologist and documented in order for your student to be eligible for an Individualized Education Program (IEP) as a student with autism. In addition to the communication and repetitive activities and movements also noted in the DSM-5, the CFR also notes two other characteristics: resistance to change in daily routines, and unusual responses to sensory experiences.
Resistance to Change
Resistance to change in environment or routines can affect behavior. If the class goes to the auditorium or to another classroom for a lesson, it may be difficult for our student on the spectrum to handle the change. If your classroom routine is different one day, or if there is a substitute teacher, this also is challenging for our students with autism.
Sensory Responses
Unusual responses to sensory experiences may lead to behavior problems. One child may get dizzy and have to shut her eyes or look away every time you wear that striped shirt. Another may get a severe headache when he hears the lawnmower across campus. You may have a student unable to enter the restroom within several hours of it being cleaned because the lingering chemical smell makes him nauseated, or a student who cannot touch his carpet square at circle time because of the texture. Lunch and snack time are difficult for students with aversions to food tastes or textures. You may need to put on your detective hat to figure out what is going on when behavior has its roots in sensory experiences.
Theories
Experts in the field of autism have developed theories about some of the unusual behaviors and characteristics associated with autism, including theories related to delayed theory of mind (ToM), weak central coherence, impaired executive function, and challenges of sensory processing.
Delayed Theory of Mind
Delayed theory of mind (ToM) has been studied by Simon Baron-Cohen, Alan M. Leslie, and Uta Frith. They concluded that children with autism have a specific deficit in ToM, which is the ability to think about what another person is thinking, and to realize that their thoughts may differ from one's own thoughts.
Your ASD student may say, "What was that food I had when I stayed with Grandma and Grandpa? You know, it was in the blue dish. What was that?" He expects you to remember something he experienced, even though you weren't there at the time. This shows a lack of ToM.
A first grader may assume that because he knows all about the ancient Aztecs, then everyone knows about them. When he finds out his classmates have no idea what he is talking about, he believes they must be stupid. When you don't have theory of mind, anything that you know is thought to be common knowledge.
A student who can't put himself in someone else's shoes may not offer sympathy or show he cares when a friend's grandfather dies. It looks like he lacks empathy, but in fact he may not have the ToM to figure out how his friend is feeling. If he is told that his friend feels the same way he felt when his dog died, then he can understand and empathize, even if he doesn't know what to say or do to help his friend feel better.
ToM is unrelated to intellectual disability (ID). Children with ID who have a mental age of about four years old demonstrate ToM, but even highly intelligent students with autism may have trouble understanding what someone else may be thinking. They often assume that everyone sees the world exactly as they do. It could explain why so many children with autism seem to lack flexible, imaginative pretend play and social understanding.
The Sally-Ann Test is Baron-Cohen, Leslie, and Frith's test of ToM: the ability to realize that others have a different perspective or understand things differently than you do. In this test, the child is introduced to two dolls: Sally and Ann. Sally has a basket, and Ann has a box. Sally also has a marble. She puts her marble in her basket so she can play with it later, and then she goes outside. After she leaves, Ann takes the marble out of Sally's basket and puts it into her own box, and then she goes away. Sally comes back and wants to play with her marble. The question is, where will she look for the marble? Typical children who are four years old or older, and children with intellectual disability who have a mental age of four or older, correctly predict that Sally will look in her basket. They realize that Sally was not here when Ann moved the marble, so she doesn't know what we know: that the marble is not where she left it.
Children with a mental age of three or younger, and many people with autism who are much older than four (even many intelligent adults) will predict that Sally will look in the box for the marble. Why? Because the marble is in the box, of course. If the student with autism knows where the marble is, then everyone must know.
Weak Central Coherence Theory
Weak central coherence has been described by Francesca Happe and Uta Frith as a "detail-focused processing style." Some people on the spectrum focus so intensely on details, even insignificant ones, that they completely miss the main idea. They can't see the forest for the trees. In school and in much of life this is considered a weakness.
One of Uta Frith's research studies involved jigsaw puzzles. She found that children with autism did just as well, or better, when the puzzle pieces were placed on the table upside down, cardboard-side up, so they couldn't look at the picture to put the puzzle together. They weren't using the information from the "big picture" at all, but were focusing on the small details, the shapes of the pieces.
