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Author Spot Light:  Introduction to Autism Spectrum DisordersModule ID# 32 Type: autism Revised: 07/2007 Instructional Evaluation - Discussion List INTRODUCTION Pretend for a few minutes that you are a traveler from another country who likes to observe in order to understand different cultures. As you wander around a placid lake you notice a picnic in the park where parents and children have gathered on a hot summer day. There is a slight breeze and fragrant flowers add freshness to the air. You see people talking and children playing or amusing themselves in some fashion. Some children are swinging; others are playing group games. Your attention is drawn to several children. One child, who looks like he’s about three years old, is having a tantrum. He wants to rip off the flower blossoms and is not happy when his parents try to distract him. His crying seems to go on for hours although it is actually minutes; LONG minutes. His parents have trouble consoling him and he doesn’t seem to talk to them. Another preschooler watches and asks incessant questions of his parents about why the other child is crying. He has no interest in playing in the sand with the other children but occupies himself by pulling on an adult and asking another question. You notice another child who is about ten years old quietly paging through a picture book about trains. He glances up from time to time to intently watch the flag fluttering in the breeze and gently rocks his body as he watches. His parents are busy talking to other parents. Nearby you notice a teenager. He flaps his hands as he moves in circles, and giggles or squeals as he twirls. You’re not sure what the source of his amusement is. Then you notice a tall, lanky solitary older teenager who is wearing a dress shirt with long sleeves and a tie. He shoulders a heavy purple back pack. Every so often he glances at the softball game in progress in a nearby field and he makes a note on his palm pilot. You wonder what type of event has brought together such different children. Then you notice a banner that reads “Welcome to the picnic of the local chapter of the Autism Society of America.” You have accidentally discovered a social event for a special group of children and their parents. Although the children described seem very different from each other, they actually all share the diagnosis of an autism spectrum disorder. A parent notices your curiosity, and walks up to you. He gives you a card that says if you wish to find out more about the autism spectrum disorders (called ASD for short), you are welcome to access a free on-line course sponsored by the Indiana Department of Education. You rush home to your computer, locate the website and you find… “Welcome to the Indiana Department of Education website course on Autism Spectrum Disorders. Prepare yourself for a quick ride into the topic of autism spectrum disorders.” This module consists of three sections, so you can easily take breaks while reviewing the content. Self-directed quizzes will be available at the end of each section. Aim for 80% accuracy with each quiz. Links to documents or articles are included throughout; just click on the www link. Section 1: Understanding the Diagnosis of Autism Spectrum Disorder You may have heard of the word “autism” because of the movie Rainman, or during special segments on recent TV news programs. You may have read articles in the newspaper, or you may have heard personal references to someone who has a child or a student with autism. However, you may be less familiar with the term autism spectrum disorder. Most people with the diagnosis of an autism spectrum disorder (ASD) have been diagnosed using the Diagnostic and Statistical Manual (DSM) criteria. The DSM is a manual of all the possible diagnostic categories approved by the American Psychological Association. Prior to 1994, there were only two categories available in the DSM under the heading called Pervasive Developmental Disorders (PDD). These two categories were autism and pervasive developmental disorders–not otherwise specified (PDD-NOS or atypical autism). In 1994, when the fourth edition of DSM was published, five categories appeared under the heading of Pervasive Developmental Disorders: autism, PDD-NOS, Asperger syndrome, Rett’s syndrome, and childhood disintegrative disorder. Rett’s and childhood disintegrative disorder are both regressive neurological disorders. There is a loss of skills that remains permanent and progressive. The first three categories, autism, Asperger, and PDD-NOS, are typically referred to as the autism spectrum disorders (ASD). With ASD, there is usually continued development of new skills. The term autism spectrum disorder is used to represent the fact that while these individuals share common characteristics, how these characteristics are manifested will differ with each individual. As a result, no two individuals will be the same. Please STOP and read the categorical descriptions in order to have a better understanding of the categories of PDD.
Diagnosing an autism spectrum disorder is sometimes complicated because there is no medical test, blood test, or MRI that will quickly and definitively indicate that a person has one of the autism spectrum disorders diagnoses. An accurate diagnosis is based on an observation of specific behavioral characteristics across a variety of environments. The behavioral characteristics typically used are listed in the Diagnostic and Statistical Manual (DSM). Diagnosis should include a comprehensive history of early development outlining family history, birth complications, and developmental milestones. Additional information should be gathered via interviews with family members or relevant caregivers, and via formal/informal assessment. While our sophistication in diagnosing children is increasing, many children continue to be undiagnosed or misdiagnosed. Sometimes this situation is due to differences in the experience and training of the evaluators. Other times this is due to the fact that the child has more than one disability or special challenges, or has had some life event that cause people to consider an alternative diagnosis. Autism spectrum disorders can be diagnosed by a physician, a psychologist with a certain level of credentialing, or a psychiatrist. For educational purposes, a school interdisciplinary team can make a diagnosis, if the team has had appropriate experience and/or training. Regardless of the medical diagnosis that a student receives, he/she will need to be assessed by a school team to determine educational eligibility to be served under this diagnosis. Specific tools can be used when one is checking for an autism spectrum disorder. These instruments include the Autism Diagnostic Interview- Revised (ADI), the Autism Diagnostic Observation Schedule (ADOS), the Gilliam Autism Rating Scale (GARS), the Asperger Syndrome Diagnostic Scale (ASDS), the Childhood Autism Rating Scale (CARS) and tests of cognitive abilities such as the Test of Nonverbal Intelligence (TONI-3), the Leiter-R or another instrument. Please read the websites below for more information on diagnosis and assessment.
As mentioned earlier, getting an accurate diagnosis is more complicated when the child has other medical, sensory, emotional, or learning difficulties or differences. Students may range from having a severe/profound cognitive impairment to being very gifted in general or in specific areas. When a student is gifted in a specific area, they are often referred to as being a savant. These individuals may have exceptional talents in calculating numbers, playing a musical instrument, or drawing. Certain individuals have attention deficit hyperactivity disorder (ADHD), mood disorders such as depression or other mental health issues, such as bipolar, clinical anxiety, or obsessive compulsive disorder (OCD). Some have learning disabilities (LD), seizures, Tourette’s, Fragile X, or allergy problems. A few have vision or hearing impairments. A subgroup seems to have chronic gastro-intestinal problems and ear infections. The majority of children with ASD will be male with a ratio of 4 to 1. While the number of those diagnosed continues to increase, current rates place the incidence of autism spectrum disorders as occurring in 1 in 166 according to the Centers for Disease Control. In some states, reported cases jump by more than 25% in a given year. In Indiana, the annual increase is estimated at 20%. The incidence of ASD exceeds the number of individuals with Down syndrome. Our country currently has approximately 1.5 million individuals on the autism spectrum. There is no known cause of autism spectrum disorders. There are many theories about potential causes. As research continues, it appears there are multiple factors involved. Current research points to the following possibilities: viral infections, adverse reaction to childhood immunizations, pollutant exposure during pregnancy, metabolic disorders, enzyme deficiencies, birth complications, and/or various defects in body chemistry or the immune system. At present, genetics seems to play a role but numerous chromosomes seem to be involved. It is possible when providing services for a given child with ASD that he or she may have other siblings on the autism spectrum, or that other family members may also have the diagnosis or have characteristics. There also seems to be a higher incidence within the immediate and extended family of sensory difficulties, depression, obsessive-compulsive disorder, and other related disorders. Regardless of the cause, we know that autism spectrum disorders are neurologically-based, and not emotional or behavioral disorders. And we know that they are not caused by poor parenting. How various characteristics of ASD are manifested can vary by individual. Children usually change as they age, develop more skills and understanding, and as they have more experiences. The next section highlights some of the specific characteristics experienced by children on the autism spectrum.
Quiz True or False
Section 2: Core Characteristics of Autism Spectrum Disorders In this section, we will discuss some of the core and defining characteristics of those with the diagnosis of an autism spectrum disorder. Characteristics described address difficulties with social skills, communication, and a restricted repertoire of activities and interests. Social Skills Have you ever made a mistake in social situations? Told a joke that did not fit the event? Revealed a secret? Misread the intentions of others? If you have, then it is easier for you to understand why individuals on the autism spectrum have such difficulty in social situations. Think about the demands that social situations place on us. We must be able to make quick judgments and respond sometimes to unpredictable events. We must be able to read the facial expressions and body gestures of others. We must be able to understand sarcasm, and not take things literally. We must understand the ever shifting social rules and the reality that there is much that is “gray” about social situations. For individuals with autism, each of these skills are missing or are functioning at a deficit. As such, social difficulties are a defining characteristic of those on the autism spectrum. Social difficulties are the primary reason that many adults with this diagnosis are challenged in employment situations. When they are young, some have minimal interest in playing or being with other people. As children, some will not engage in reciprocal social interaction. When social engagement does occur, it is typically on their own terms or is very awkward. At the same time realize that these responses may reflect a lack of skill in knowing how to interact rather than a lack of desire. Even in adulthood, most still struggle to understand the social, verbal and nonverbal behavior of others within complex social situations. Often these individuals are socially naïve and easy prey for predators such as bullies. Often they have limited gestures, awkward body language, and/or say honest or inappropriate statements to others that should have been kept private. Deficits in social interactions can also impact the ability to initiate, maintain, reciprocate, and terminate conversations with peers or adults. A high school student named Ethan was sitting in a group of four students. While waiting for class to begin, the students were all talking among themselves. Ethan looked to the perimeter of the room and started talking about a scene he saw in the latest movie he watched. He didn’t understand how to gain attention from a peer, begin a conversation, or how to reciprocate. Even though it seemed like he wanted to talk with someone in class, he lacked the necessary skills. In addition to being literal, individuals on the autism spectrum are very rule bound. For example, a teacher says to wait a minute to the girl in her class. The girl looks at her watch for a minute to pass, then demands attention from her teacher. At home, a father is driving his son to school one morning. He grabs his coffee to drink in the car on the way. His son starts screaming and tells his father that he can’t drink and drive because this is what television says the rule is when driving. His son is not trying to annoy his dad. He simply is following the rules. See Making (and Keeping) Friends: A Model for Social Skills Instruction at: http://www.iidc.indiana.edu/irca/SocialLeisure/socialskillstraining.html
Communication Nine-year-old Jessica was trying to show her teacher what kind of snack she wanted out of the cabinet. She grabbed her teacher’s hand to lead her over to the area where the snacks were kept; then, pointed to the cabinets. It was clear that she wanted something, but not clear exactly which snack she preferred since her point was to a wide area of space. Communication difficulties also vary across individuals on the autism spectrum. Some can be very articulate, even as young elementary school students. Some will ask incessant questions. Often this represents a bid for interaction and attention rather than a bid for information. Some are delayed in learning to talk and use language. These children usually do not compensate by using extensive gesturing and pointing. Instead, young children may put an adult’s hand on what they want, pull the adult over to the object they want to access, or engage in problematic behaviors to express their message. When working with any individuals on the autism spectrum, is imperative to understand the method they use to express themselves and teach them viable ways so that everyone can understand the meaning. Some students may grunt, point a finger, pull an adult to an area or use a picture cue, a single word, phrase, or a complete sentence depending on whether the student has verbal or no verbal skills. Some children never develop meaningful speech and will need to use signing and/or augmentative communication devices. Others begin their journey towards developing oral communication skills by using echolalia. Some have a very restricted repertoire of use of their communication skills and need direct instruction and support to expand their skills. Even those who develop oral skills, often have other language/communication problems in social and academic situations. For additional information, visit the following websites:
If the student does have verbal skills, he/she may often use a different vocabulary for the original meaning of the words (i.e., idiosyncratic). For example, Mikkey is a high school student that uses the word ear muffs to mean headphones or straight letters to mean printing. Everyone working with the student needs to be a part of creating an on-going list of words that the student uses in order to understand his/her language. These children are very concrete in their understanding of the world and can have significant comprehension problems and significant gaps in their store of background knowledge. The person with ASD tends to interpret language in a literal manner. For example, a peer says, “I could eat a horse.” The student with ASD will be looking around for a horse and wondering how the friend is going to eat a horse. Since students with ASD often misinterpret language, jokes and sarcasm can be misunderstood to be a lie that will lead to mistrust with individuals. Students with ASD also have difficulty understanding written directions. During language, a worksheet lesson may be to identify verbs. The directions state to color the words. The student with ASD may misinterpret written information to mean that all of the words on the page should be colored instead of just the verbs. It is important for the adults and students around the individual with ASD to stop to think about how the student may interpret the words being used to make sure they are understood. Teach the student to write down words he/she doesn’t understand in a notebook or to ask a trusting peer buddy for an interpretation. Everyone processes what he/she hears (receptively) at different speeds. Some students with ASD may be able to process information quickly. For others, it may take four minutes after given a direction to line up for lunch. This behavior should not be interpreted as being oppositional. It is best to allow the time needed by waiting or walking away from the student before giving another direction or setting a limit. Or use visual prompts to augment your verbal requests. Students with ASD can have higher verbal language but lack reciprocal conversation. Joey walks into his fifth grade classroom and starts telling his classmates which fluorescent lights in the hallway are going to burn out today. He continues to explain the way the light is circuited and how an electrician works on lights. Joey doesn’t wait for any comments from his peer or notice how the person is reacting to his initial conversation. Actually he believes that since he is interested in the operation of how lights operate so does everyone else that he encounters. Joey needs to be taught how to have reciprocal conversations.
Restricted Repertoire of Activities or Interests
The other significant area that is part of DSM criteria involves repetitive, restrictive and stereotypical behavior. This too varies by individual, by age, by circumstance, and by the level of awareness about others. Rocking one’s body, for example, is a stereotypical behavior. It can occur when one is anxious or agitated at home, school and in community situations. Some students are taught, as they get older, that this is a behavior that they should not do in school or the community, but can do in the home environment. Repetitive behaviors might include lining things up, insuring that all cupboard doors are closed, aligning chairs in a certain fashion, and making certain noises. Stereotyped movements might include hand flapping, rocking, spinning, jumping and other movement patterns. Restrictive behavior involves having a narrow set of interests. Trains, air conditioners, mileage between cities, computers, or credits at the end of movies are some examples of favorite topics of interest. There may be no interest in talking about or doing things outside of the current topic area. Some children become walking encyclopedias of facts on certain topics. Because there is comfort in routine or sameness, these children often have difficulty shifting from a favorite topic. On the other hand, these areas of intense interest can be used to motivate learning and as reinforcement. See Restricted Repertoires in Autism and What We Can Do About It: http://www.iidc.indiana.edu/irca/education/restrict.html
Quiz: For these questions, think about an individual across the autism spectrum with whom you live or interact. 1. Provide four examples of social difficulties experienced by folks on the autism spectrum. 2. Provide four examples of communication challenges experienced by individuals on the autism spectrum. 3. Provide two examples of restricted repertoire of activities and interests.
Section 3: Additional Characteristics In addition to the defining characteristics of social difficulties, communication challenges, and a restricted repertoire of activities and interests, individuals on the autism spectrum may also experience behavioral challenges, sensory processing difficulties, and have deficits in areas related of Theory of Mind and Executive Functioning.
Problematic Behavior Perhaps the greatest challenge to those who interact with individuals across the autism spectrum is the presence of challenging behaviors. The student may exhibit ritualistic or compulsive mannerisms, self-stimulatory behavior, refusal, withdrawal, self-injury/abuse, property destruction, or physical aggression. A student named Matthew would repeatedly push his chair into his desk every time he would get up. In addition, he walked to all locations using this patterning of stepping, forward three steps and backward two steps, until he would reach his destination (e.g., even if just to sharpen his pencil). This is an example of a ritualistic behavior. Other students may flap their arms, brush their hands against their face repeatedly, rock, or hum as a self-stimulatory behavior. Refusal may look like a student not wanting to enter an area or complete assignments. When a student is withdrawn, it is usually because they prefer to be alone. Students’ may exhibit self-injury by biting themselves on the hand, picking their scabs, showing no fear, or putting themselves in harmful situations (e.g., standing in front of moving cars). Other students may react to their environment by physically hurting their siblings, peers, family members or staff. The purpose of this module is not to address problematic behaviors. Those who are interested in this topic should visit the module on Conducting a Functional Behavioral Assessment. The primary thing to remember is that outward behaviors are typically symptoms of issues in the person’s life. These issues may include lack of communication skills, sensory dysfunction, illness, poor educational opportunities, poor home environment, or a host of other reasons. The role of the Functional Behavioral Assessment is to determine the underlying cause(s) and to develop a behavior support plan to address these causes.
SensoryLisa is in Junior High School. She wears a terry cloth band around her head and spandex pants under her tight jeans. When she walks through the halls, she has to walk along the edge and touch the lockers, doors, and any object that is in her path. When she reaches the classroom, she sits in a desk with her back to the teacher and puts in her earplugs to listen to the lecture. Our senses are conditioned to organize and interact with the world around us. It is important to realize, understand and accept that some individuals on the autism spectrum may actually feel, hear, see, smell, and taste at an extreme level. They may be hypersentive (over-reactive) or hyposensitive (under-reactive). In addition, the way their body balances, moves, and is positioned in the environment affects the student’s sensory processing abilities. Below are the various ways that sensory challenges impact these individuals. Touch is an important sense that is needed for social interactions with loved ones or to show care for a person. However, some students don’t like to be touched. A slight bump in the hallway by peers or wearing a tag inside of their shirt feels like someone is inflicting terrible pain on his/her body. Others need deep pressure through a firm touch, tight clothes, deep massage, or by sleeping between their mattresses. Some people with ASD have a high tolerance for pain and may not realize a shoulder is broken until it is swollen for several days. Auditory sense is difficult to block out. Some students can hear bugs tapping on the window or the fluorescent lights in the room buzz. Imagine how it would feel to hear a fire alarm, vacuum cleaner, or a room full of children at a birthday party at a magnified level. Challenge yourself to be in tune with the many sounds (e.g., ticking of clock, wind blowing, grass being mowed) that are within all environments. Other students will respond by acting like they can’t hear a person. Many individuals with ASD also have difficulties processing auditory information. An individual may have difficulty discriminating between sounds, remembering directions, paying attention to a voice, and/or reading aloud. Vestibular sensations are in our inner ear. The inner ear receptors register every movement we make and every change in head position. This encompasses messages from our neck, eyes, and body. Rotary movements involve moving in circles (e.g., spinning). Linear movements (i.e., back and forth, side to side, up and down) especially when rapid (i.e., rocking in a chair, swaying, swing on a tire) may cause most to become dizzy, nauseated, or create a headache. Individuals on the autism spectrum disorder may actually crave these kinds of movements. Students with ASD crave linear movement which means they need a lot of vigorous activity in order to get started. Some students become distressed and show anxiety due to a fear of falling, being picked up, standing up, or sledding down a hill. Kristin was in elementary school. Upon arriving at school, she needed to spend ten minutes swinging. During activities she would often rock back and forth to calm herself. Other children may twirl in circles, assume upside-down positions, or jump from the top of a jungle gym. Visual sense involves an individual on the autism spectrum being distracted by classroom projects hanging from the ceiling, or feeling blinded by the sun, or not being able to focus in the presence of fluorescent lighting. Others may perseverate on shiny objects that spin or see the reflection of light bouncing off of the walls.Olfactory (smell) and Taste are commonly ignored or overlooked by people working with individuals on the autism spectrum. Yet some students are highly agitated by perfumes, the odor of foods or animals, hand lotions, flatulence (gas), menstruation, and certain environments (e.g., farms, restaurants, pet stores). Some may gag if a food that tastes terrible is presented. Those who are hypersensitive to smells may avoid people, places, or foods so they are not around the odor. Yet individuals that are hyposensitive to smells may crave odors or tastes. They may lick or taste inedible objects (e.g., play dough, chalk) or prefer spicy, hot or sour foods. Proprioceptive feedback helps us position our bodies and move through the environment. Our proprioceptors are in our muscles, joints, ligaments, tendons, and connective tissue. Proprioceptors work closely with tactile and vestibular systems through body awareness, motor control/planning, and postural stability. A student may need to keep their eyes open in order to know how their own body is moving. Motor control/planning involves coordinating one’s gross and fine motor skills within the environment. Those who have difficulty in this area may bump into people or obstacles, or frequently fall or trip. Some students will not be able to regulate how much pressure to exert when grasping an object. As a result they hold pencils or crayons too tight, and their written work is messy. Finally, an individual on the autism spectrum may have poor posture, lean his head on his hands, and be unable to balance on one foot. In all of these areas, children may feel emotionally insecure due to feeling uncomfortable or inadequate, rigid, or intimidated by the environment. It is imperative to accommodate individuals with sensory needs across the day to help them calm their nervous systems so they can function in school, home, community, or at their place of employment. This time should not be considered as a reward, but as a necessary requirement of a person’s day. Build in times during the day to allow the person with ASD to have a break or time to calm him/herself. For suggestions about sensory programming, refer to the following book: Kronowitz, C. (2001). Answers to Questions Teachers Ask About Sensory Integration. Las Vegas, NV: Sensory Resources.
Executive Function Students on the autism spectrum have a difficult time organizing and handling multiple tasks. They are better at performing one activity at a time. As a result, they will have a hard time multi-tasking, completing assignments that require multiple tasks, showing up to class with all the materials needed, or performing a job that requires multiple job duties. Rachel is a four-year-old preschooler. Her favorite animal is a pig. She carries figurines of pigs to school, imitates sounds for the pigs, and carries the pigs with her the entire time at school. The only time that the school staff is sure that she is focused on the task is when it involves pigs. Rachel’s attention to lessons is narrow unless a pig is in the pictures or next to her. Students that have a deficit in executive function have difficulties maintaining attention and controlling their impulses for the one object they are focusing on (perseverating). Executive Functions also includes deficits in the area of making transitions and organizing oneself. John was tested with an above average intelligence when he was in eighth grade, yet is always losing his homework, can’t find his way around school in time for the next class, and gets behind in long term projects. These are all common organizational and transition characteristics of an individual on the autism spectrum.Theory of Mind Individuals on the autism spectrum have difficulty with Theory of Mind. In other words, they have difficulty inferring other people’s mental states (e.g., thoughts, beliefs, desires, intentions). As a result, some of our students are taken advantage of and become the target for bullies because they can not read the true intentions of others. Individuals on the autism spectrum also have difficulty differentiating fact from fiction. In extreme cases, students have begun to believe that they are a specific cartoon character or an animal (e.g., cat, dog). This quality may also result in them developing unrealistic long term goals, such as believing that they can become a Hollywood director simply by showing up in California. See Theory of Mind in Autism: Development, Implications, and Intervention at: http://www.iidc.indiana.edu/irca/education/TheoryofMind.html In addition to these characteristics, individuals on the autism spectrum may have difficulty with toilet training, may be an extremely picky eater, may develop seizures, may not sleep well throughout the night, and may have other health issues (e.g., chronic early infections, gastrointestinal difficulties). Conclusion Again, remember that autism is a complex neurobiological disorder. How it impacts each individual will differ. The best way to learn about the diversity of autism is to read book or view videos that reflect the personal or family accounts of those who live with this diagnosis. Visit the Indiana Resource Center for Autism website at www.iidc.indiana.edu/irca for a listing of books and videos and for information on how to access these items.
Quiz
1. Provide five specific examples of sensory processing difficulties experienced by individuals on the autism spectrum.
2. A student on the autism spectrum has tremendous difficulty organizing and prioritizing assignments. What characteristic causes this difficulty?
1. A student on the autism spectrum is engaging in a problematic behavior. Staff and family are at their wits end. What is the process one should follow?
2. An individual on the autism spectrum desperately wants to make friends. However, it is clear that classmates do not enjoy this person’s company and make fun of him instead. He reads their teasing as an act of friendship. What characteristic does this reflect?
5. Name two additional characteristics that may challenge those who live and work with an individual on the autism spectrum.
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