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71 High-Functioning Autism and Asperger’s Syndrome Frank J. Sansosti District School Board of Pasco County, Florida
Kelly A. Powell-Smith University of South Florida
BACKGROUND AND DEVELOPMENT Autism is a neurobiological disorder of unknown etiology that is defined on the basis of observable behavioral and developmental features. Defined as a triad of impairments, autism is characterized by deficits in social development, communication, and repetitive behaviors or interests (American Psychiatric Association, 1994). Traditionally, autism was considered to have an almost uniformly poor prognosis that was associated with mental retardation and underdeveloped language. However, since the late 1970s, the categorization of children with autism and related disabilities has been recognized as a spectrum of disorders, which is used to describe the characteristics of the disability that may present themselves in various combinations, from very severe to very mild. At one end of the spectrum are children with classic autism. These children have more severe deficits, including significant cognitive and speech delays. At the other end of the spectrum are those children with similar characteristics of classic autism, but they display low average to above-average cognitive abilities and normal language abilities, at least superficially. Such children are commonly referred to as having high-functioning autism or Asperger’s syndrome (HFA/AS). No diagnostic guidelines for HFA currently exist; the term is most commonly used as a clinical descriptor. By convention, if a child meets the diagnostic characteristics for autism but displays cognitive ability in the low average to above-average range, he or she is said to have
HFA. Although identified in the literature at about the same time as classic autism, AS is a relatively new classification of autism spectrum disorder (ASD) that was only recently recognized in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV; American Psychiatric Association, 1994). The current diagnostic criteria for AS include the presence of significant impairment in social interactions and displays of restricted behaviors and/or interests, but no significant delay in language or cognitive development. At present, the DSM-IV-Text Revision (DSM-IV-TR; American Psychiatric Association, 2000) represents autism and AS as two distinct conditions with different sets of diagnostic criteria. However, recent research is unclear as to whether HFA and AS truly represent two distinct conditions or whether they differ only in symptom severity (Volkmar & Klin, 2000). In recent years, several studies have been devoted to examining the distinction, or lack thereof, between HFA and AS. Most of these studies examined the disparity in neurocognitive aspects and profiles between children with HFA and AS (e.g., Ozonoff, South, & Miller, 2000). A review of these studies presents mixed results and only promotes greater confusion over the differential diagnosis of HFA and AS. Although the advancements in neuropsychology are important, they are beyond the scope of this chapter. In this chapter, HFA and AS are combined because it is still undetermined whether their treatment requirements differ. Thus, for the purposes of prevention and intervention design, understanding the needs of these children is more important than attending to the specific diagnostic label (Kunce & Mesibov, 1998). 949
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Children’s Needs III Overall, HFA/AS may involve the same fundamental symptomatology, differing only in degree or severity. HFA/AS is currently understood as a developmental disorder characterized by children who (a) have significant difficulties in social interactions and relationships despite a desire to engage socially; (b) display a lack of empathy that is usually milder than that seen in classic autism; and (c) engage in unusual patterns of interest, especially the tendency to focus too much on certain objects or topics (Gillberg & Ehlers, 1998; Howlin, 1998). Children with HFA/AS generally have average to above-average cognitive abilities (sometimes in the superior range), and language functioning is generally stronger than in classic autism, although it is often unusual in pragmatic ways (Landa, 2000; Twachtman-Cullen, 2000).
Developmental Aspects The developmental patterns of difficulties for children with HFA/AS vary among age groups. Key elements during the preschool years include difficulty with joint play skills, poor understanding of basic social stimuli (e.g., calling the child’s name), and an appearance of being in one’s own world (Mundy & Stella, 2000). As children with HFA/AS enter elementary school, concerns over behavior and lack of social skills become paramount. Elementary school–age children with HFA/AS often have difficulty changing routines and/or following directions, leading the child to be considered hyperactive, inattentive, and sometimes aggressive. In addition, elementary-age children with HFA/AS appear socially immature and display obsessive interests or strict adherence to routines. Difficulties in socialization and behavioral adjustment remain the most significant factors during middle and high school years. At this point, children with HFA/AS stand out from their peers, and obsessive interests may evolve into obsessive– compulsive behaviors. Their inability to make friends and fit in may result in further withdrawal and significant affective problems such as depression or anxiety (Volkmar & Klin, 2000).
Prevalence Over the past several years, the number of children and youth identified with ASD has increased substantially. Traditionally, the prevalence of autism has been reported to be 4 to 6 per 10,000 children (Lotter, 1967). However, recent statistics have suggested that the prevalence may be considerably higher. For example, Scott, Baron-Cohen, Bolton, and Brayne (2002) reported the overall 950
prevalence of ASD to be 57 per 10,000 children. When considering just higher functioning individuals, Hyman, Rodier, and Davidson (2001) suggested prevalence rates of HFA/AS to be about 48 per 10,000 children. It has been argued that such increases are the result of the broader diagnostic schema of autism that now includes HFA/AS and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) and may not indicate a change in the actual incidence of ASD. However, when separating the effects of a broadened spectrum of dysfunction, the prevalence rates across the autism spectrum remain remarkably high. In addition to epidemiological increases, the U.S. Department of Education reports that the number of ASD-diagnosed children served under the Individuals with Disabilities Education Act (IDEA) has increased 1,354% between 1991 and 2001 (U.S. Department of Education, 2003). When services are examined at the state level, increases in services for children with ASD reportedly range from 10% to 48,600% (Massachusetts and Illinois, respectively). In round terms, for every two children with ASD registered through IDEA in 1991–1992, roughly 14 registered in 2000–2001. Unfortunately, no information was found regarding the percentage of students receiving services specifically for HFA/AS, suggesting that, given the higher prevalence of HFA/AS, there may be a large unserved student population. Given these data, it is likely that educators and other student support personnel increasingly will be called upon to restructure services to better serve children with HFA/AS.
PROBLEMS AND IMPLICATIONS Social Interactions As is the case with all ASD, HFA/AS shares a common characteristic of poor, or absent, social relatedness and erroneous use of social skills, which remains the most difficult life challenge for these children and their families (Volkmar & Klin, 2000). Children with HFA/AS may be anywhere from withdrawn to active on a continuum of social behavior. At times, they may prefer to spend time alone, or they appear to have little awareness of or interest in others. In some instances, children with HFA/AS may attempt to interact with others in abnormal, socially clumsy, or unacceptable ways (e.g., blurting out socially inappropriate comments and not understanding the effects of those comments on others). Despite individual variability, social behaviors of children with HFA/AS are characterized by a failure to (a) recognize and orient to
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Chapter 71: High-Functioning Autism and Asperger’s Syndrome social stimuli (e.g., name calling or clapping) and social cues (e.g., body language, gestures, facial expressions, or tone of voice); (b) understand the perspective of others; and (c) initiate and maintain conversations with others (Twachtman-Cullen, 2000). Research on the social impairments of individuals with HFA/AS has led to a hypothesis involving a deficit in ‘‘theory of mind’’ (ToM). Theory of mind is the cognitive ability to infer the mental states of others (e.g., their perspectives and beliefs) and interpret another person’s actions from observable external behavior. For example, if a child runs screaming away at the sight of a dog, one can infer that the child is scared. Likewise, if a child cheers at the sight of his or her mother or father walking into a room, one can infer that the child is happy to see the parent. Not only does ToM involve the ability to understand the perspective of another person, it also involves understanding that other individuals are able to form different perspectives about the events that exist within the environment (Happe & Frith, 1996). From this viewpoint, ToM is necessary for basic social understanding and, later, social communication because it involves the child’s ability to respond to visual cues (e.g., facial expressions or gestures) for the purpose of sharing information regarding an object or event with another person (Mundy & Stella, 2000; TwachtmanCullen, 2000). However, this ability is impaired in individuals with HFA/AS. Baron-Cohen (1995) used the term mindblindness to describe the inability of individuals with ToM deficits to appreciate the feelings, knowledge, or beliefs in other people, or to fully recognize or interpret their own thought processes. Simply stated, a deficit in ToM interferes with the child’s ability to distinguish his or her own thoughts or feelings from the thoughts and feelings of others. According to this view, a disturbance in ToM gives rise to the difficulties that children with HFA/AS have in social understanding and communication. Specifically, individuals with HFA/AS will exhibit deficits in identifying the communicative intents of others, understanding figures of speech (e.g., idioms), and following the conventions of topic maintenance when speaking (Landa, 2000; Mundy & Stella, 2000; Twachtman-Cullen, 2000). These difficulties have a major impact on the child’s social reasoning skills and behavior. For example, a child with HFA/AS may have difficulty identifying whether being run into by another child in physical education class was intentional or accidental. Likewise, children with HFA/AS may have difficulty understanding how their own actions (e.g.,
engaging in specific routines during lunch or talking excessively about trains) may affect the thoughts of others. The ability to read social situations and to adjust one’s communicative behavior based on external behaviors is a task that is performed effortlessly in typically developing children (Twachtman-Cullen, 2000). Therefore, the capacity for ToM is governed largely by the indirect, socially mediated environmental cues, which can be particularly abstract. However, children with HFA/AS often are constrained by what is observable in a very concrete, physical world. Because children with HFA/AS have a specific difficulty in understanding and interpreting abstract social information, they are particularly compromised in their ability to engage in reciprocal social interactions.
Functional Communication Children with HFA/AS often develop good structural language skills. Thus, they may speak in syntactically and grammatically correct structures. In this sense, the content and form of language appear to be relatively intact. However, it is the use of language for communicative purposes (pragmatics) that is significantly impaired (Landa, 2000; Twachtman-Cullen 2000). The pragmatic use of language requires crucial knowledge and skill, not only to employ speech to express intentionality for a communicative purpose, but also to make judgments about the listener in order to regulate speech style and content. Despite their developed language skills, children with HFA/AS often have great difficulty communicating because of their inability to recognize the thoughts, feelings, and intentions of their listener. In this regard, pragmatic difficulties in children with HFA/AS appear to be directly linked to impairments in ToM skills (Landa; Twachtman-Cullen). That is, impaired social communication may be a reflection of the difficulty children with HFA/AS have with reading and understanding social cues. The literature has identified several specific areas of difficulty children with HFA/AS have in the pragmatic use of language (see Landa, 2000, for review). Because of the variability of functioning and stages of development, not all children with HFA/AS will display each of these deficits. However, most children with HFA/AS will display limited use or severe impairments in areas such as eye contact, nonverbal behavior, affect, and prosody.
Eye contact. It is not uncommon for a child with HFA/ AS to display poor or inconsistent eye contact during social situations. As a result, others may limit or avoid 951
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Children’s Needs III interactions with the child with HFA/AS, because lack of eye contact is often perceived as unsociable behavior. It may be that children with HFA/AS avoid eye contact to escape from social interactions they perceive as aversive or difficult (Moore, 2002). Limited practice making eye contact may impair the communication of children with HFA/AS even further, because eye contact is necessary if they are to observe facial and social cues in the environment and to tailor subsequent communication to meet the needs of the listener. Without frequent eye contact, reciprocity in social communication is difficult for children with HFA/AS.
Nonverbal behavior. Nonverbal aspects of communication, such as facial expression, body posture, and hand movements, exist in many areas of our daily lives. At times, the entire meaning of a message can be conveyed simply through body language rather than words (Twachtman-Cullen, 2000). However, children with HFA/AS often have difficulty using and understanding the messages that nonverbal mannerisms convey. For instance, children with HFA/AS may be less likely to pick up on typical nonverbal behaviors used in the classroom, such as a teacher putting one finger over her lips to call for quiet or shaking her head to indicate disapproval.
Affect. Another common characteristic of children with HFA/AS is their absence or inappropriate use of affect. Most often, children with HFA/AS appear detached from their social environment because they display a placid expression without emotion (Myles & Simpson, 2003). However, there may be times when the child displays inappropriate affect, such as laughing when another person is hurt, failing to show excitement upon receiving a desired item such as a gift or toy, or displaying a fear response in nonthreatening situations.
Prosody. Prosody refers to affective expression or intonation when speaking to indicate meaning. A disturbance in producing intonation during speech, or dysprosody, is a well-known feature of individuals with HFA/AS (Twachtman-Cullen, 2000). Very often, individuals with HFA/AS are described as having very flat, emotionless speech. However, speech characteristics of children with HFA/AS can range on a continuum at different points in development. For example, children with HFA/AS may display exaggerated inflections by talking with an excessively high pitch, at too high or too low a volume, or with a rapid, staccato delivery (Myles & Simpson, 2003). 952
When combined, these areas of pragmatic difficulty often lead to severe impairments in initiating and maintaining social interactions. Because they lack an understanding of appropriate social customs, many children with HFA/AS have difficulty initiating conversations. Initiation of conversations often centers on a favorite topic, which the child discusses with excessive detail, regardless of the cues provided by the conversation partner (Myles & Simpson, 2003). Favorite topics can range from popular childhood interests (e.g., Harry Potter or Yu-Gi-Oh!) to highly technical descriptions of places or objects (e.g., the Bermuda triangle, deep fry cookers). Perseveration on a favorite topic often leads to the inability to maintain a reciprocal conversation. Therefore, many children with HFA/AS are described as being verbose, carrying out a pedantic monologue while offering little or no opportunities for their listener to alternate roles (take turns) in conversational exchange (Landa, 2000; Twachtman-Cullen, 2000). In addition, children with HFA/AS often take a literal interpretation of abstract language such as jokes, sarcasm, and idioms. For example, a child with HFA/AS might interpret a sarcastic expression such as, ‘‘Well, isn’t that nice?’’ as meaning it really is nice. Likewise, it is unlikely that a child with HFA/AS would be able to identify the communicative purpose from the headline ‘‘Red Tape Holds Up New Bridge.’’ Such descriptions provide some indication that children with HFA/AS organize the world of people and things into discrete labels according to more concrete, factual perceptions of their environment (Myles & Simpson, 2003; Twachtman-Cullen, 2000).
Behavior Problematic behaviors in children with HFA/AS span a wide range and tend to vary according to the child’s development and intellectual ability. Although stereotyped, repetitive behaviors (e.g., body rocking or hand flapping) may occur in individuals with HFA/AS during highly stressful situations, they are most likely found in children with classic autism. More often, children with HFA/AS engage in restricted patterns of behaviors and insist on doing things in a certain way (Howlin, 1998). For instance, they may become distressed when not permitted to eat lunch in the same location each day. Likewise, they may insist that books and school supplies be arranged in a certain order. Any change in such routines is often perceived as difficult and may result in problematic or tantrum behaviors. Children with HFA/
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Chapter 71: High-Functioning Autism and Asperger’s Syndrome AS may also display restricted patterns of behaviors through an all-absorbing preoccupation with a circumscribed topic (Howlin; Myles & Simpson, 2003). For example, they may be obsessed with learning extraordinary amounts of factual information about vacuum cleaners, dinosaurs, or freeway interchanges in Los Angeles. Over time, the topics of interest may change for a child with HFA/AS, but they tend to dominate every aspect of his or her life.
Implications for Educational Practice Several implications for educational practice exist in relation to the impairments that children with HFA/AS display. Perhaps the most common implication is the likelihood that children with HFA/AS will engage in poor or ill-mannered social behaviors. For instance, the child may tell the teacher what student was responsible for committing a disobedient act after the teacher asks, ‘‘Who did that?’’ Likewise, the child may stop someone in mid-conversation to comment on their bad breath. Aside from such social blunders, children with HFA/AS also are likely to demonstrate inattention and distractibility during structured and unstructured academic times. At any moment, the child may withdraw. For example, during a small group reading exercise, while one student was reading a passage on Spanish conquistadors, the child with HFA/AS commented on the materials used for constructing the fort depicted in a picture at the bottom of the page. Not surprisingly, educators frequently may have to redirect the child’s attention or restate the directions for a given assignment or homework. Children with HFA/AS also may have difficulty with organizational planning. Therefore, tasks that involve planning, prioritizing, and organizing are affected. Because of this, children with HFA/AS often have difficulty completing work on time or fail to turn in assignments. In addition, children with HFA/AS have difficulty extracting meaning and determining relevant from irrelevant information, leading to difficulties in comprehension (Myles & Simpson, 2003). Finally, children with HFA/AS are likely to demonstrate a poor appreciation of various problem-solving skills, using only one strategy for a variety of social and academic situations (Myles & Simpson, 2003). For this reason, abstract situations (e.g., tornado drills) or academic content (e.g., inferential reading comprehension questions, word problems, or algebra) are usually very difficult for children with HFA/AS to understand.
ALTERNATIVE ACTIONS FOR PREVENTION Despite the identified areas of difficulty, appropriate support and education can dramatically increase the independent functioning of children with HFA/AS. Because many of these difficulties stem from a lack of understanding or a misinterpretation of the world, preventive actions can substantially decrease the occurrence of inappropriate behaviors in children with HFA/AS. Carefully designed and individualized environmental supports help children with HFA/AS understand the world, help them accept change, and increase their independent functioning (Myles & Simpson, 2003). Strategies include using visual supports and incorporating choice and preference, as well as various academic accommodations. Unfortunately, the scientific support for some of these prevention strategies is limited (e.g., task presentation strategies and teacher communication strategies). Although the research on these strategies is increasing, it is necessary for practitioners to monitor progress through systematic data collection.
General Strategies Visual supports. Visual supports consist of pictures, photographs, or lists that prompt or remind children with HFA/AS to engage in a particular behavior or prepare them for an upcoming activity or task. Because children with HFA/AS often have difficulty understanding the world in which they live, these visual supports provide the structure and predictability necessary for effective functioning in a variety of settings (e.g., classrooms and the community). Specifically, visual supports allow children with HFA/AS to anticipate upcoming events and any expectations regarding setting or task requirements, thereby creating a sense of security and reducing anxiety. Visual supports can be used in a variety of forms such as schedules, rules, or other graphically represented cues to support the inclusion and education of children with HFA/AS. For example, Morrison, Sainato, BenChaaban, and Endo (2002) taught children with autism to use visual schedules representing activities in the classroom and documented improved independent transitions across activities. In addition, visual supports have been used to promote self-initiated social interactions and decrease problem behavior (Charlop-Christy, Carpenter, Le, LeBlanc, & Kellet, 2002). For a complete review of the variety of visual supports that have been used to increase flexibility and independence in children 953
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Children’s Needs III with HFA/AS, the interested reader is referred to Myles and Simpson (2003).
Choice and preference. Historically, children with developmental disabilities have had very little choice regarding the events that affect their lives. More recently, there has been a push to allow children to exert greater control through choice making. Choice making refers to the process of allowing a child to select an activity among several available alternatives. For example, a child with HFA/AS may be given the choice of whether to complete math or reading work first during independent seatwork time. The expectation is that the student will complete tasks for both academic areas, but the choice regarding which one to do first is student directed. Related to choice making is the concept of preference. Preference refers to those objects, particular tasks, and activities that an individual finds most appealing and naturally rewarding. When choice making and preferences are incorporated, children with HFA/AS may exert more control over their lives and thus reduce some of the odd behaviors resulting from anxiety. Over the past two decades, an increasing body of research has demonstrated the beneficial effects of allowing choice-making opportunities for children with various developmental disabilities, including children with HFA/AS. For example, incorporating choice making into daily tasks has resulted in increased task engagement, decreased disruptive behavior challenges (Moes, 1998; Peterson, Caniglia, & Royster, 2001), and increased homework completion (Moes). Likewise, incorporating individuals’ preferences into activities has been shown to significantly decrease problematic behaviors and increase time engaged in academic and social contexts (e.g., Vaughn & Horner, 1997).
Academic Strategies A number of simple, cost-effective strategies work well in preventing the academic difficulties often experienced by students with HFA/AS. These strategies work to prevent inappropriate behaviors and promote the acquisition of appropriate academic and social behaviors by creating a structured and predictable environment. Primarily, these strategies are educator directed and can be grouped into those that focus on the environment, presentation of tasks, and teacher communication strategies.
Environmental strategies. Students with HFA/AS function best in classrooms that are not only well 954
organized and predictable (Attwood, 1998) but also minimally decorated and physically simply arranged. Thus, everything from the arrangement of desks to the layout of bulletin boards should be simple and uncluttered (Moore, 2002). Such efforts give the student with HFA/ AS the kind of structure and predictability necessary to function effectively in the classroom, as well as increase the probability of maintaining the student’s attention to academic tasks. According to Moore, if desks are grouped, groups should be kept to a maximum of four or five students. Also, under such circumstances it may be best to seat the student with HFA/AS toward the outside of the group. Similarly, if desks are put in rows, the student with HFA/AS should be seated near the end of the row. While facilitating social interactions, such desk arrangements allow the student with HFA/AS to have some distance from others when overstimulated, as well as allow the teacher to easily reach the student. In addition to a simple classroom design, a variety of visual supports may be provided to help students with HFA/AS stay focused and on-task. For example, part of keeping the classroom structured and predictable is the establishment of a small number (e.g., three to five) of briefly stated classroom rules. Once established, rules should be posted where they are visible to all students (Paine, Radicchi, Rosellini, Deutchman, & Darch, 1983). In addition to clearly posting rules, providing the student with HFA/AS a visual schedule of activities for each day may be helpful (Moore, 2002; Kunce & Mesibov, 1998). Such visual schedules can be written or picture based, depending on the needs of the child. Regardless of the method, research on visual schedules suggests that they increase on-task behavior for students with HFA (Bryan & Gast, 2000). Schedules may be used for activities in a single classroom (i.e., at the elementary school level) or for activities across various classrooms (i.e., for middle school and high school). In a classroom setting, it is best to post the schedule in a clearly visible location (e.g., on the student’s desk or on the chalkboard or whiteboard). Students may carry a printed copy of the schedule for use across classes. Schedules may also provide information on daily, weekly, or monthly activities for the student with HFA/AS (Kunce & Mesibov). The use of posted rules and schedules allows students with HFA/AS to anticipate what is expected of them academically and behaviorally.
Task presentation strategies. Many of these strategies are consistent with the notion of eliminating distracting stimuli. For example, task directions should be briefly
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Chapter 71: High-Functioning Autism and Asperger’s Syndrome worded and provided in writing when possible. In a study by Kunce, Marcus, Bundy, and Sebolt (in press, as cited in Ozonoff, 2003), students with HFA performed significantly worse than control students when provided with oral instructions. However, when provided with written directions, the students with HFA in the study performed as well as control students. Wording can be simplified by using less complex vocabulary and shorter sentences (Kunce & Mesibov, 1998). In addition to providing written instructions, directions should be repeated as needed when they are complex or presented orally (Moore, 2002). Also, tasks that rely on inferential language skills, such as math word problems and some reading comprehension questions, may need to be reworded to make essential information obvious and to remove distracting information before presenting the questions to students with HFA/AS. For directions and word problems, teachers might also consider highlighting critical information for the student with HFA/AS. In addition to strategies focused on keeping things uncomplicated, a number of visual task presentation strategies are available that can help children with HFA/ AS organize their work. One strategy educators use is color-coding academic content areas. That is, all materials that pertain to a particular subject (e.g., worksheets, folders, and boxes used for handing in reading assignments) are kept the same color. Educators may also create task checklists or job cards that provide the student with a list of steps to be completed when engaging in a particular task that may be difficult to complete independently. Finally, strategies that use the physical layout of assignments can include using graph paper (or turning lined paper sideways) so students can use the lines as columns to complete math problems (Moore, 2002). In addition, organization of assignments can be improved by offering the child with HFA/AS advance organizers or study guides that help him or her differentiate relevant from irrelevant information. For a more detailed discussion of these strategies, the interested reader is referred to Moore (2002) and Kunce and Mesibov (1998). Finally, it may be advantageous to incorporate the student’s special interest into lessons when possible. These adjustments can cut across content areas (e.g., math, reading, science, and history) and likely will increase motivation. This strategy is consistent with the idea of incorporating preferences, as discussed earlier (Vaughn & Horner, 1997). For example, if a student has a strong interest in trains, the student might be required to complete a report on the history of trains in the United States for a history assignment, math problems
might be constructed using travel distance from one train station to another, or the student could examine the various methods used to power trains for science.
Teacher communication strategies. A large percentage of instruction is conducted through teacher communication (e.g., lecture and demonstration; Kunce & Mesibov, 1998). Given the social communication deficits often present with HFA/AS, a focus on teacher communication strategies is needed to prevent misunderstandings. Two primary strategies fall under this category: priming students and notifying students of changes in routine. Priming consists of providing students with HFA/AS with lesson materials, schedules, descriptions of activities to occur, expectations for grading, and so forth prior to conducting the lesson (Wilde, Koegel & Koegel, 1992). Priming can be done either immediately before the lesson or test or done further in advance, such as the day or evening before (Moore, 2002). It is most useful to preview information or activities with which the student is likely to have the greatest difficulty. Priming may be conducted at home or at school and by various individuals (e.g., parents or teachers), but it is best done in a relaxed and encouraging environment with someone who will be patient with the student (Myles & Simpson, 2003). In addition to priming, teachers should also consider how they communicate changes in routine to students with HFA/AS. Because surprises can lead to inappropriate behaviors or shutting down, educators would be wise to consider ways they can communicate such changes before they occur (Moore, 2002). For example, students can be notified in advance about an afternoon tornado drill. Students should be informed particularly of steps and behaviors expected of them during the upcoming event. Methods such as emergency cards and change in routine cards (Moore), checklists or advance organizers for alternative routines such as assemblies and field trips, and Social Stories (described in the following sections) may be useful for this purpose.
ALTERNATIVE ACTIONS FOR INTERVENTION Preventive actions in and of themselves are necessary, but sometimes not sufficient, for producing changes in the functioning and development of children with HFA/AS. Therefore, more specific interventions that are designed to increase the skill, frequency, or quality of behaviors emitted by children with HFA/AS may be necessary. In 955
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Children’s Needs III this chapter, interventions for social, behavioral, and academic skills are separated from preventive actions because they require direct teaching to the individual child with HFA/AS or require consultation or additional training for those staff who are working with the child. The following discussion of interventions recommended for children with HFA/AS is not exhaustive but represents those strategies that have the most empirical support for their use.
Social Skills Interventions Group social skills training. In general, weekly group-based social skills training (SST) programs for children with HFA/AS are built around the components of structured learning. That is, regardless of the skills being taught, each lesson consists of breaking a particular social skill (e.g., initiating conversations) into its component parts (e.g., prepare ahead, ask yourself what you are going to say, make eye contact, say hello) and sequentially teaching toward a level of mastery. Mastery is achieved by first modeling appropriate use of the skills for students and then having the students engage in role-playing in situations closely related to real life. During role play, the child with HFA/AS could be required to initiate a conversation with another person as the other person is engaged in a separate task. The student with HFA/AS would have to ask to join in or ask the other person to join him or her in another activity. Following the role play, the student would receive feedback from other children in the group, as well as from the instructors. Several important principles, or essential ingredients, that underlie the efficacy of SST were delineated by Krasny, Williams, Provencal, and Ozonoff (2003). First, SST for children with HFA/AS must be concrete. Children with HFA/AS are often very concrete and literal thinkers. Therefore, it is essential to specifically define behaviors for the child in terms of what the behavior looks or sounds like (e.g., personal space is defined as an arm’s length away). Second, SST should be highly structured and predictable. Most lessons will change from week to week. However, maintaining certain elements within the group (e.g., starting each session with homework review; having game time halfway through each lesson) is essential to ensure predictability for the students. Visual schedules or activity lists can also be used. Third, in addition to being concrete and predictable, SST should foster group belonging. Allowing students to get to know one another and develop friendships outside of the group setting can be extremely important. Belonging 956
to a group will not only decrease the level of stress children with HFA/AS may have, but also help them share interests and take the perspective of others. Finally, any SST group should be goal directed. Both group and individualized goals should be selected and practiced as part of the weekly lesson. The research literature describes various methodologies and approaches in SST (e.g., role-playing, games) for children with HFA/AS. Much of this research has focused on improving conversational and perspective-taking skills (e.g., Bauminger, 2002). In most of these studies, positive trends were found (e.g., increases in initiation and maintenance of conversations, increased recognition of facial cues, increased social problem-solving ability). However, inability to generalize skills to other settings (e.g., home, school, community) was usually a major limitation. Despite the lack of evidence for skill generalization, group SST is an effective method for teaching the component skills necessary for effective social communication, and it should be considered a worthwhile intervention for children with HFA/AS.
Social StoriesTM. Social Stories are individualized written stories that briefly explain challenging social situations through visual supports and text (Gray, 1998). The goal of any Social Story is twofold. First, a Social Story provides descriptive information regarding a target social situation, such as the people involved, the sequence of events, and the thoughts and feelings of others. Second, the story provides an appropriate way to respond to a given social cue or situation (e.g., how to remain calm and follow directions during a fire drill). In these ways, Social Stories offer information on how to understand and interpret social cues (i.e., theory of mind skills) and provide instruction in initiating, responding to, and maintaining appropriate social behavior (Sansosti, Powell-Smith, & Kincaid, 2004). Social Stories can be developed by educators, parents, or others who work closely with the child with HFA/AS. Although Social Stories are relatively easy to create, considering the different types and correct ratio of sentences (e.g., descriptive, directive, and perspective sentences) is essential (see Gray, 1998, for review). Without adherence to the guidelines outlined by Gray, a Social Story is likely to become a list of directives for appropriate behavior. However, the goal of a Social Story is to teach understanding, with little emphasis on controlling inappropriate functioning. Research examining the effectiveness of Social Story interventions for children with HFA/AS has grown in
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Chapter 71: High-Functioning Autism and Asperger’s Syndrome recent years (see Sansosti et al., 2004, for a detailed review). This research has investigated the effects of Social Story interventions for children with ASD on such things as increasing greeting and sharing behaviors (Swaggart et al., 1995), improving social interactions during lunch (Norris & Dattilo, 1999), and increasing social communication skills (Thiemann & Goldstein, 2001). From a review of the available literature, Social Stories appear to be an effective strategy when used in applied settings for children with HFA/AS.
Video modeling. A recent strategy that has been shown to be effective for children with HFA/AS is the use of video modeling, in which the child with HFA/AS watches a videotape of a model engaging in the target behavior to be imitated. Compared with live modeling, video modeling has several advantages for teaching new skills and promoting maintenance and generalization of skills for children with HFA/AS. First, video modeling capitalizes on the visual strengths of children with autism. Second, videotape can be created for use in a variety of natural contexts (e.g., home, community), whereas live modeling is confined to the clinic or classroom. Third, it allows for repeated viewings of the same model, without the model having to be present. Fourth, video modeling allows for a standard model to be shared with a variety of individuals. Finally, children with HFA/ AS often enjoy watching videos. Research on video modeling has demonstrated its effectiveness for teaching behaviors such as conversational skills (Charlop & Milstein, 1989), functional living skills (Shipley-Benamou, Lutzker, & Taubman, 2002), perspective-taking skills (Charlop-Christy & Daneshvar, 2003), and play and daily living skills (Charlop-Christy, Le, & Freeman, 2000). In addition, video modeling has been shown to be more effective than live modeling (Charlop-Christy et al., 2000). Specifically, in a comparison with live modeling, video modeling led to both quicker acquisition and greater generalization of skills. Therefore, video modeling may be used to increase the generalization of skills for children with HFA/AS, a task that has been difficult to accomplish in previous research.
Peer-mediated approaches. Access to peers who model appropriate social conventions is crucial to promoting the social–communicative development of children with HFA/AS (Howlin, 1998). However, mere access to peers does not constitute a successful intervention. Rather, a specific structure for using typically
developing peers must be incorporated. In a peermediated approach (e.g., peer buddies and peer tutoring), typically developing peers take an instructional role by prompting and praising the social behaviors of children with HFA/AS. Specifically, peers are trained how to make social initiations and how to respond promptly and appropriately to the communicative attempts of children with HFA/AS. After such training, peers are placed in situations where they engage in social activities with children with HFA/AS free from adult interaction. Despite the need for continued access to trained peers, peer-mediated approaches have the advantage of providing a natural means for promoting socialization in children with HFA/AS. That is, peer-mediated approaches are based on naturally occurring social behaviors rather than on artificial or simulated scenarios (Myles & Simpson, 2003). With a greater reliance on naturalistic training, peer-mediated approaches have the advantage of enhancing maintenance and generalization of skills. Peer-mediated procedures represent a robust approach for teaching social interaction skills to children with HFA/ AS. Investigators have employed a wide range of peermediated procedures to increase peer social initiations (e.g.,Odom & Strain, 1986) and social–communicative interactions (e.g., Laushey & Heflin, 2000). Peer-mediated interventions recently were expanded to teach peers how to effectively motivate children with HFA/AS to respond to multiple environmental cues within natural contexts. For example, peer-based Pivotal Response Training has demonstrated improved effects on incidental teaching approaches to increase social interaction, sociodramatic play, and communicative interactions of children with HFA/AS (e.g., Terpstra, Higgins, & Pierce, 2002).
Behavioral Interventions Differential reinforcement. Differential reinforcement decreases problem behaviors through the use of rewards for an alternative or incompatible replacement behavior. By using differential reinforcement, undesirable or inappropriate behaviors are weakened, primarily through ignoring, while more desirable behaviors are reinforced. For instance, a child with HFA/AS who frequently takes objects from other students during recess is reinforced for asking for desired objects. The effects of differential reinforcement on children with HFA/AS are well established in research literature. In fact, the use of differential reinforcement 957
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Children’s Needs III may be viewed as a tried and true approach because it is part of many of the traditional approaches to behavioral treatment for children with autism (e.g., discrete trial training). Currently, differential reinforcement strategies have been used to increase communicative intent and social interactions (e.g., Drasgow, Halle, & Ostrosky, 1998). In many of the studies in which differential reinforcement strategies have been used, a subsequent decrease in stereotypic or restricted behaviors also was observed.
Self-management. Adherence to routines or preoccupied interests may be one of the few ways that children with HFA/AS cope successfully with stress (Howlin, 1998; Myles & Simpson, 2003). Simply trying to eliminate such behaviors may only increase levels of anxiety and result in an increased need for children with HFA/ AS to engage in routines or in ritualistic or other inappropriate behaviors. Therefore, it is important to systematically teach children with HFA/AS how to manage their own behavior and, subsequently, develop selfcontrol. Self-management works by having children with HFA/AS actively record and evaluate whether their behavior was appropriate or inappropriate, then receive rewards. Depending on the frequency and type of reinforcement, behaviors are shaped to systematically increase levels of self-control. A major advantage of a self-management intervention is its capacity to teach independence. Because self-management strategies teach children with HFA/AS self-control, it is likely that their behavior will generalize to other settings where no intervention is in effect. That is, the emphasis of the self-management intervention changes from a short-term strategy to improve a single target behavior to a more global process of changing multiple behaviors across a number of environments and people (Koegel, Koegel, & Parks, 1995). Self-management procedures have been used to increase productivity and accuracy of academic tasks, ontask behavior, and social skills across a wide variety of learners, including children with HFA/AS. When used specifically with children with HFA/AS, self-management procedures appear to be useful for decreasing stereotypic behaviors (Koegel et al., 1995), increasing the frequency and duration of on-task behaviors (Callahan & Rademacher, 1999), and enhancing maintenance and generalization of social skills (Shearer, Kohler, Buchan, & McCullough, 1996). Although the research base regarding the efficacy of self-management strategies for children with HFA/AS is emerging, this strategy should be 958
considered effective because it is a logical extension of prior research among other populations.
Academic Interventions Systematic and explicit instruction. Systematic instruction means that educators use, to the greatest degree possible, instructional methods that are validated, carefully planned, and evaluated to determine the efficacy of instruction (Iovannone, Dunlap, Huber, & Kincaid, 2003). In addition, strategies for promoting the generalization and maintenance of skills are incorporated into systematic instruction plans. Furthermore, systematic instruction employs strategies consistent with recommendations discussed in the prevention section of this chapter (e.g., advance organizers, simple concrete instructions, and discrete steps). These strategies will help the student with HFA/AS stay focused and engaged during teacher-directed instructional times. In addition to these efforts, teaching strategies derived from the field of Applied Behavior Analysis should be used. For example, the use of task analysis, shaping, and fading procedures can be very helpful when designing instructional interventions for students with HFA/AS, and these strategies have a long history validating their utility across a variety of learners. A final, but critical, component of systematic instruction is data collection to document progress in response to instruction. Frequent ongoing data collection is needed to make changes in response to student learning (or lack thereof ) quickly before precious instructional time is lost.
Comprehension strategy instruction. Students with HFA/AS are generally good readers. However, they often have difficulty with comprehension of written material. In fact, these students often can fluently decode material well above the level of material about which they can answer comprehension questions. Given this pattern, it is suggested that materials used for comprehension strategy instruction be at a level necessary for successful comprehension. In many cases, these materials may be at a lower level than these students are accustomed to reading (i.e., the level they are capable of decoding fluently; Moore, 2002). Using cloze tasks, in which the child must supply a missing word in a reading passage, may prove very helpful in teaching comprehension. While controlling the level of materials to ensure success with comprehension tasks, teachers will need to be careful to choose materials that are age appropriate to guard against motivational difficulties. Once again, incorporating special-interest
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Chapter 71: High-Functioning Autism and Asperger’s Syndrome content into comprehension instructional material may promote student motivation. In addition to comprehension instructional materials, direct instruction in the use of visual supports such as story mapping (semantic maps), picture drawing, outlining, and charting may help build comprehension skills. These strategies help students with HFA/AS organize the information they encounter when reading content area material or fictional works and when completing math word problems, which typically rely heavily on reading comprehension skills. For example, story mapping involves the student answering a set of questions about important ideas conveyed in a story (e.g., who, what, where, why). These questions about story details provide the reader with a means to organize, remember, and integrate information from narrative text. Similarly, graphic displays (e.g., descriptive or thematic maps) provide a visual picture of the content in expository text as well as show important linkages across content (Baker, Gersten, & Grossen, 2002). Similar to the visual strategies used for reading comprehension, strategies that have the student draw pictures and make charts for use with math word problems have been described by Moore (2002). Typically, drawing a picture is used much in the same way as manipulatives. Picture drawing would be used for a problem like the following, which involves making a comparison: Fifteen people board a fishing boat in Key West. Fourteen of the 15 people on the boat want to fish that day. The captain has 10 fishing poles on his boat. Before the boat can leave the dock, the captain needs to know how many more fishing poles he needs to get so all the passengers who want to fish that day can have their own pole. How many does the captain need to get? Using the picture-drawing strategy the student would draw representations for both fishing poles and people and then use these drawings to help solve the problem (e.g., compare the number of people wanting to fish with the number of fishing poles available). In contrast, the charting strategy described by Moore (2002) is more useful for word problems involving multiple categories of items (e.g., types of furniture—desk, table, chair, bookshelf ) and several items in each category (e.g., tables made out of different materials, different colors, etc.). Because comprehension requires the student to use a complex set of skills simultaneously (e.g., knowing
vocabulary, determining the purpose of the reading, and remembering only relevant information), it is important to explicitly teach the metacognitive strategies needed for eliciting the skills and knowledge necessary to adequately comprehend (Carnine, Silbert, & Kameenui, 1997). Therefore, in addition to teaching the use of the visual strategies described here, explicit instruction on the thinking processes involved in comprehension is needed. The implication is that students must understand, in a very concrete way, the processes required for adequate comprehension. Students with HFA/AS have great difficulty with reading comprehension questions about sequencing, inferencing, making predictions, generalizing, drawing conclusions, and distinguishing between fact and fiction. Thus, explicit instruction should be provided regarding the strategies the student must employ to answer such questions. Similarly, for math problems requiring greater comprehension of language (e.g., for tasks beyond math computation), explicit direct instruction is needed. Explicit instruction makes the process of solving word problems or determining viable answers to comprehension questions very concrete. One way to accomplish this is to use a ‘‘model— lead—test’’ teaching format (Kozloff & Rice, 2001). First, the educator models the steps one completes to determine a solution or answer. Once the process is modeled, the teacher carefully leads (responds with) the student through the process, prompting the student as needed. Next, students overtly demonstrate the process by themselves for the teacher so the teacher can see students go through each step. The teacher must provide corrective feedback and praise as part of this final step. The point of using an explicit instructional format is to not only make the process very concrete for the student, but also maintain student attention and prevent learning errors.
Homework and study support. A homework support strategy that is helpful for students with HFA/AS is the use of assignment notebooks (Moore, 2002). Simple in design, these tools are used to track assignments and help teach responsibility to students with HFA/AS. Once a notebook has been established, each day after the student has recorded the assignment, the teacher checks the notebook before the child leaves school to ensure that assignments are recorded accurately. The child is then required to show the parent the notebook at home and the parent signs the notebook when the child has finished the designated homework. Finally, the student brings the notebook 959
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Children’s Needs III back to school the following day and shows it to the teacher. Typically, the teacher offers some sort of reinforcement for students’ efforts to use the notebook and for completing homework. In addition to homework support, students with HFA/AS benefit from assistance related to note taking. Students with HFA/AS often have difficulty listening and writing at the same time. They may experience problems separating main ideas from details. Also, these students may have motor difficulties that make writing more challenging. Each of these difficulties can lead to problems in taking accurate and useful notes. One intervention is to provide direct instruction in how to distinguish main ideas from detail information (Moore, 2002). Other interventions that may help include the teacher providing notes to the student, tape recording lectures, assigning a peer to take notes for or share notes with the student, or allowing the student to type his or her notes. Moore describes a number of assistive technology devices that may be useful for students with HFA/AS.
SUMMARY Children with high-functioning autism/Asperger’s syndrome (HFA/AS) display a variety of social, behavioral, and communicative difficulties despite average to aboveaverage cognitive functioning. Over the past several years, rates in the frequency of diagnoses and special education referrals for children with HFA/AS have increased at an alarming rate. With such an increase in the number of children identified with HFA/AS, it is increasingly important to understand how to effectively build supports and interventions to assist in the development of social competency, behavioral regulation, and academic learning. To best support children with HFA/AS, it is necessary to develop an approach that integrates a number of prevention and intervention strategies. Preventative approaches are quick environmental change strategies that create structure and predictability for children with HFA/ AS. Visuals (e.g., picture schedules) help the student understand when or where activities or tasks start, as well as what to do during and following those activities or tasks. Incorporating choice and preference motivates children with HFA/AS to engage in activities that may otherwise be less rewarding for the child. In addition to such prevention strategies, more direct interventions are often needed to increase the skill, frequency, or quality of behaviors displayed by children with HFA/AS. Often, these 960
interventions involve teaching social skills and social understanding, reducing the frequency of inappropriate and/or rigid behaviors, and teaching academic content (e.g., comprehension) in a systematic and explicit manner. A combination of the prevention and intervention strategies discussed in this chapter, along with methods for collaboration, consultation, and evaluation of treatment effects, is necessary to ensure that the needs of children with HFA/AS are met.
RECOMMENDED RESOURCES Books and Other Printed Material Howlin, P. (1998). Children with autism and Asperger Syndrome. Chichester, England: John Wiley. This book offers an excellent resource for understanding the characteristics of individuals at the higher end of the autism spectrum. Information is included on appropriate treatment approaches and educational practices. Full of practical treatment advice, this book is a good resource for both teachers and parents. Iovannone, R., Dunlap, G., Huber, H., & Kincaid, D (2003). Effective educational practices for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18, 150–165. This article provides an integration of years of research on autism spectrum disorders into a curricular model appropriate for implementation in many houses of education. Specifically, it offers descriptions of empirically supported core elements that should be part of any instructional program for students with autism spectrum disorders. Guidelines for developing, implementing, and evaluating instructional approaches are discussed in the framework of best instructional practice. Moore, S. T. (2002). Asperger syndrome and the elementary school experience: Practical solutions for academic and social difficulties. Shawnee Mission, KS: Autism Asperger Publishing Company. This text provides an accurate description of many of the social and academic difficulties experienced by elementary-age children with Asperger’s syndrome. In addition, it describes practical preventive strategies that aim to increase organization and enhance academic productivity and accuracy for students with Asperger’s.
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Websites http://www.maapservices.org The website of the Information and Support Network for More Advanced Persons with Autism and Asperger’s Syndrome contains information regarding the characteristics of autism and related disabilities, relevant legal information, and teaching strategies. It also offers an international listing of persons, agencies, and organizations that support individuals and families afflicted with autism spectrum disorders. http://www.udel.edu/bkirby/asperger/ This website, Online Asperger Syndrome Information and Support (O.A.S.I.S.), provides access to a host of links regarding the characteristics, assessment, education, research, and support of children with HFA/AS. In addition, it offers Web-based forums and private monitored message boards and chat rooms.
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