JOURNAL OF EDUCATIONAL AND PSYCHOLOGICAL CONSULTATION, 12(4), 385–395 Copyright © 2001, Lawrence Erlbaum Associates, Inc.

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School-Based Consultation for Asperger Syndrome Joan S. Safran and Stephen P. Safran Ohio University

Effectively supporting students with Asperger Syndrome (AS), an autistic spectrum disorder characterized by significant social deficits, presents unique challenges for school-based consultation. Because an identifying variable of AS is average to above-average intelligence, and the majority of students, although socially deficient, are not abusive or aggressive, most remain in inclusion classrooms. Their greatest need is to learn and practice appropriate social interactions with teachers and peers. This article proposes that consultants take on responsibilities as “social translators” to provide general educators with an information base and understanding of this little-known condition, and to help interpret the child’s behavior in the context of this disability. The class is busily engaged in small groups preparing for the upcoming science lab. One student, however, oblivious to the commotion around him, has remained in his seat reading. You prompt him to put away the book and join a group. For the next 10 minutes he moves around the room, loudly asking each group if they want him. ExasNOTE: Kathleen C. Harris of Arizona State University West is column editor for THE CONSULTANT’S CORNER. Correspondence should be addressed to Joan S. Safran, College of Education, Ohio University, Athens, OH 45701. E-mail: [email protected]

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perated, you tell him to work with Group 2. Within minutes, he is following you to ask questions unrelated to the science lab. You redirect him back to his group. His unmistakable voice is now heard asking if anyone has seen the latest Star Wars movie. The other students exchange “looks” and ignore his comments. He eventually wanders over to the planets poster. When you approach him, he announces that the group does not want him and asks if he can work alone. This child is very academically able, but so difficult in class. He is certainly bright enough to follow directions and get along with the group, but somehow, that does not ever happen. …

AS, a neurologically based, autism spectrum disorder, may explain this child’s behavior. Widely recognized in other parts of the world, only recently has this condition commanded much attention in the United States. With prevalence estimates as high as 7 in 1,000 (Ehlers & Gillberg, 1993), it may well become the fastest-growing disability group of the early 21st century. Although AS significantly affects social perception and interaction, it is associated with high rates of depression (Ghaziuddin, Weidner-Mikhail, & Ghaziuddin, 1998; Wing, 1981) and suicide (Wolff, 1995) and dramatically affects individuals and families, the condition is frequently misdiagnosed and misunderstood . Unlike students with more visible disabilities, a typical appearance and absence of identifiable “markers” leaves peers and adults without explanation for their extreme social awkwardness (Williams, 1995). We too often assume that intelligence equates with social competence: The intelligence and vocabulary these “little professors” display helps mask the disability and heighten the irritation provoked by someone who is “smart enough to know better” (S. P. Safran, 2001). Their ability may buy grudging tolerance—but no support—as troublesome “know-it-alls” or lead to inaccurate diagnosis as learning disabled (LD), emotional and behavioral disordered (EBD), attention deficit disordered (ADD/ADHD) or other mental health disabilities. Because the combination of symptoms can be puzzling (Attwood, 1998; Cumine, Leach, & Stevenson, 1998), the critical first step for school-based consultants and intervention assistance teams is to understand the condition.

PERVASIVE DEVELOPMENTAL DISORDERS AND ASPERGER SYNDROME Pervasive developmental disorders (PDD), sometimes referred to as autistic spectrum disorders, the autistic continuum or disorders of empathy (Gillberg, 1996), are a group of related conditions that present three types of developmental delays: skills in reciprocal social interaction, communica-

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tion and stereotypic behavior (American Psychiatric Association, 1994; Szatmari, 1998). Although AS is considered the mildest on this continuum, its unique combination of symptoms baffles professionals and parents alike. According to the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (4th ed. [DSM–IV]; American Psychiatric Association, 1994), AS is specifically composed of two primary clusters, the first being a qualitative impairment in social interactions. This includes such traits as delays in understanding and eliciting nonverbal behavior, severe difficulties in establishing peer relationships, and deficiencies in social reciprocity. The second cluster, restricted areas of interest and stereotypic behaviors and activities, includes preoccupation with one restricted topic of interest and/or parts or objects, inflexibility or rigidity (sticking with one set, sometimes dysfunctional routine), and/or stereotyped, repetitive motor movements. Despite adequate language (except in pragmatics), cognitive and adaptive skills, these deficits typically result in actions perceived as socially offensive and undesirable. Their long, formalized, pedantic speeches about railroad schedules or other unpopular topics, inability to empathize or understand others (also called “mindblindness”), motor clumsiness, and peculiar gaze generally lead to social ostracism and ridicule by peers. Current research suggests that these deficiencies likely have genetic origins, resulting in neuropsychological and social-cognitive processing deficits (Frith & Happe, 1999; S. P. Safran, 2001).

THE ROLE OF SCHOOL-BASED CONSULTATION Supporting students with AS in educational settings presents both familiar and unique challenges for school-based consultation. Although many students will require direct intervention services as specified on an individual education plan (IEP; including for some, one-to-one aides), nearly all will remain in general education. The most important objective of consultation is to foster relationships between students with AS and peers and adults in the schools. Given thecomplexityofthiscondition,consultationwillspanawiderangeofservices, including coordination of the child’s various therapies and interventions.

Understand Asperger Syndrome and Share Information With Colleagues First and foremost, consultants and members of intervention assistance teams should learn about the basic characteristics of AS. Unlike other dis-

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abilities, the AS diagnosis clarifies and explains many seemingly unrelated classroom behaviors (S. P. Safran, 2001). Because AS is a pervasive disorder occurring across settings, parents can be a particularly strong resource in the search to understand and work effectively with their children. Consultants should screen the emerging literature base and online resources to ascertain and then share those that are most applicable and teacher friendly. Guiding parents and teachers to these resources can also help them to feel less isolated in coping with this currently little diagnosed condition. It is also critical that the primary consultant establish trust and rapport with the student. Direct communication with the student about feelings, behaviors, and preferred modes of support both garners a wealth of information and understanding and builds a foundation for trust in future rocky times. Simple remedies that may minimize student distress (e.g., skipping raucous pep rallies, sitting in a secluded spot for assemblies, using headphones or earplugs for quiet work in learning center-style classrooms, best ways to take notes and keep organized) can be explored and shared with classroom teachers. A proactive meeting with the student’s teachers early in the year, geared to explain the manifestations of AS and suggest classroom strategies, can affect teacher attitudes and preclude many problems. Teachers and staff need to learn how to separate the child from the syndrome and to avoid interpreting unusual comments or behavioral styles as deliberate disrespect. Educators must recognize that some behaviors, like interruptions and sustained focus on one topic long after the class has moved on, are not personality flaws but reflections of brain function; children with AS have rigid cognitive patterns and difficulty changing their line of thought. With understanding and support to channel special interests in appropriate ways, their ability to think differently and focus intently may not only contribute to the class but eventually reap major benefits for society as well. People with AS have lived among us for centuries, and there is now increasing speculation that great men such as Albert Einstein and Thomas Jefferson (Ledgin, 2000) had AS. As information about this condition becomes more widely known, we can expect students to be identified at an increasing rate. The consultant will therefore serve as an information conduit to other educators, preparing them to recognize symptoms of AS and refer appropriately.

Screen and Diagnose Screening and diagnosis for AS is the next responsibility for school-based consultants. First, the consultant will need to offer workshops/in-service,

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written information, and resources to the full faculty to sensitize them to the varied indicators that a child might have AS. As with other disabilities, the first step after referral is to have teachers, parents, or other significant individuals complete a behavior checklist. Currently, there are three behavior checklists that can be used for this purpose, but only one has been standardized on a North American population. The Australian Scale for Asperger’s Syndrome (Attwood, 1998) is a 24-item scale divided into five categories: social and emotional abilities, communication skills, cognitive skills, specific interests, and movement skills. Each item provides an example for clarification, but several of the behaviors relate specifically to Australian and British culture/idioms. Although the scale has a high degree of face validity, it has undergone no psychometric standardization for reliability or validity. The Autism Spectrum Disorders Screening Questionnaire (Ehlers, Gillberg, & Wing, 1999), developed and standardized in Sweden, is a 27-item alternative. Based on a sample of 110 six- to seventeen-year-old children, and a “validation” group of 34 youth clinically identified as having AS, a 2-month test reliability of .94 was obtained, as well as an 84% success rate by parents and 65% by teachers for diagnosing AS. These are considered acceptable levels by standards established by the psychiatric profession. The recently published Asperger Syndrome Diagnostic Scale (ASDS; Myles, Bock, & Simpson, 2001) is the only available scale standardized on a North American population. The 50-item ASDS is divided into five subscales (language, social, maladaptive, cognitive, sensorimotor) consisting of 7 to 13 items each. Teachers, parents, or others who know the child indicate whether each symptom was either “observed” or “not observed.” A total test score provides an overall “Asperger Quotient” that suggests the probability of an individual having AS. A sample of 115 children and adolescents with AS from 21 states composed the normative group. Internal consistency reliability for all 50 items is reported as 0.83, whereas interrater reliability listed as 0.93. In addition, ASDS scores correctly classified AS in 85% of the cases. Given its ease of use and scoring, the ASDS appears to be the screening method of choice at this time. Overall, if initial screening data from two raters indicate a child may be at risk for AS, then a referral to a knowledgeable mental health professional is warranted (S. P. Safran, 2001). Be aware however, that because many clinicians have inadequate information or limited experience with AS, consultants should choose the mental health agency or service provider with extreme caution.

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Choose and Design Classroom Settings for Maximum Comfort In placing the student with AS, consider the classroom environment, teacher style, and range of peers. The personality of the teacher may ultimately determine the child’s success in school. The ideal teacher is patient, predictable, flexible, genuinely accepting of differences, calm, kind, and concerned with social, as well as academic development. The student will welcome consistency, routine, and a willingness to offer logical explanations of why classroom procedures are followed. Open, less structured classes can be very distressing to one who craves predictability and rejoices when the daily and weekly schedules are visible on the board or on the corner of the desk (Kunce & Mesibov, 1998; Williams, 1995). If particular classmates have been noticed as especially compassionate or accepting, keep them in the classes with a student with AS whenever possible to help provide social support and reduce isolation. Avoid proximity to known bullies and those who have victimized the child in the past (J. S. Safran, 2002).

Provide a Safe Haven Students report that simply getting through the school day, surrounded by people and expected to interact appropriately, leads to extreme stress and fatigue. A time frame and location for regular or self-selected “time-out” can offer the student much needed relief. Although recess or lunch provides opportunities to practice socialization, the lack of structure and noise level may engender anxiety. If no other time is practical, either might be used for the child to find some solitude in the library, empty office, or classroom, and so on. Especially if “alone time” is not built into the child’s schedule, teachers should learn to detect physical (e.g., pacing) or verbal behaviors indicating that the student is approaching “meltdown”; older students can often recognize these signals in themselves. If student and teacher agree that a therapeutic (rather than punitive) time-out in a safe environment can be accessed in these instances, students are spared the fear of being “trapped” in a situation that they cannot cope with or believe is escalating out of control. Anticipating that this child may react differently or more intensely to some disturbance or unexpected event, the consultant should be available to act as an active listener and help prevent or defuse a crisis (J. S. Safran, 2002).

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Serve as Case Manager Given the nature of AS, its combination of symptoms and newness to the U.S. educational world, therapies and interventions span a wide range, including but not limited to, sensory motor integration, speech and language, social skills training, individual counseling, physical therapy, and medication (see Attwood, 1998; Klin & Volkmar, 2000). The consultant should facilitate meaningful communication among and between therapists, teachers, and parents, looking to coordinate the focus of the interventions, share goals, and plan ways to reinforce skills across settings. Extracurricular activities, if well structured and carefully chosen so that student abilities might neutralize social deficiencies (e.g., competitive mathematics groups) or club advisors are sensitive to and accepting of differences, can be especially meaningful to this child who is socially excluded. Structured social activities, in which students with AS can be provided with an overall understanding of the social rules, are the safe routes to follow.

Facilitate Group Participation Skills Although the educational community embraces cooperative learning and other group-based activities, it is naïve to assume that students can participate effectively in teams without specific instruction. By teaching group process, procedures, and roles, typical students, as well as those with AS, can learn critical interpersonal skills to help them function in tomorrow’s workplace. One role of social translators is to interpret the child’s strengths. Finding ways to capitalize on these strengths in group projects, while emphasizing acceptance of individual differences, is critical to this process. In addition, predetermined grouping, guided by the teacher’s knowledge of the nature, empathy, and maturity of the other students can be integral to success. Individuals with AS have reported on the horrors of self-selection for those who are chosen last, if at all. Furthermore, because those with AS rarely respond to group social cues, simple written and/or verbal directions regarding group process and tangible indicators, for example, of directions and tangible indicators of speaking time (e.g., egg timer, group secretary with a stopwatch) can help prevent them from making blatant interpersonal errors or dominating the group.

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Model Social Translation for Teachers and Students Baffled by seemingly obvious social obligations, taking idioms and sarcasm literally, and impervious to interpersonal cues (S. P. Safran, 2001), those with AS quickly establish reputations as “nerds,” “geeks,” “clueless,” “outsiders.” Social translators can help explain peer interactions and label emotions, intent, or experiences. The consultant, in the context of classroom co-teaching (e.g., teaching group skills), can model response patterns for teachers and peers. For example, if a boy with AS continuously hugs his fourth-grade peers, despite their obvious disgust, a consultant can model ways to explain to this boy the connection between his hugging and the other boys running away. She could then create a more acceptable alternative such as a special handshake or “high five.” The consultant can also demonstrate effective ways to prepare the student for changes in routine, halt obsessive commenting, redirect and help widen the student’s narrow special interest (see Kunce & Mesibov, 1998; Williams, 1995). Classroom teachers, regularly using these techniques, are modeling for classmates with an ultimate goal of having them become the primary social translators.

Help Create True Classroom Communities Any approach that results in positive, respectful peer interactions and supportive classroom communities, benefits all students. Classroom activities should highlight and value the diverse contributions of students. A class might brainstorm to identify the special talents and needs of each and every member. Using this information, teachers might assign partners for a designated time period (month, semester, etc.) and set individual and partner goals. An empathic child might use social translation strategies to help a classmate with AS, while he helps her with computers or math; when the time period is up, the class can celebrate their growth and set new goals. Various types of peer buddy systems have been successful in supporting students with severe disabilities in general education classrooms. One program created a credit course about disabilities and ways to facilitate inclusion for high school students who were paired with special education partners (Hughes et al., 1999). Although a strictly social, relatively invisible disability may call for innovative approaches, the consultant can help teachers discover and adapt models most appropriate for the child’s degree of disability, gender, age, and situation. Three relevant techniques were identified by Schaffner and Buswell (1992; cited in Turnbull, Pereira, & Blue-Banning, 2000) for “friendship facilitators”: (a) finding opportuni-

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ties (to connect students to each other), (b) providing interpretations (of behaviors in the context of different strengths and commonalities among peers), and (c) making accommodations (as needed to promote interactions). Turnbull et al. (2000) studied teachers who interfaced these strategies within the traditional Hispanic cultural values of respeto and personalismo (respecting human dignity and the search to become a “good person”) to create classrooms in which relationships between students with and without disabilities would flourish. Teachers, typical students, and those with disabilities and their parents uniformly reported and demonstrated growth in social development, academic skills, and self-esteem. They concluded that friendship facilitation, in varied forms, should be a high priority in all classrooms. This is clearly an area in which a little effort goes a long way. A common, recurring dream among parents of children with AS is for them to make a friend.

CONCLUSION As public awareness of AS grows, school-based consultation services will evolve in new ways. Parents and professionals will justly become more vocal in advocating for appropriate supports in schools, especially in the area of interpersonal skills. In formulating programs and strategies to meet these needs, we will be charting new territory in an educational system that historically has been chiefly concerned with academic and intellectual achievement. Although these changes may ostensibly be to provide for children with AS, in light of the increasing emphasis on collaboration in the ever-changing workplace, we will in fact be generating experiences of universal value to students. Individuals rarely have the luxury of working in a vacuum, and we can anticipate that schools will assume greater responsibility for modeling and teaching collegiality and broadening the concept of diversity. One of the unique aspects of individuals with AS, many of whom are cognitively gifted, is that they have the power to “think outside the box” and focus intently in a narrow sphere. If depression and isolation can be prevented or overcome, they have the potential to offer society dreams and discoveries as yet unimagined. However, if our educational system is unable or unwilling to meet the challenges of AS, we would be committing a crime of immense proportions; the next generation of Einsteins and Jeffersons might be lost.

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REFERENCES American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. Attwood, T. (1998). Asperger’s Syndrome: A guide for parents and professionals. London: Jessica Kingsley. Cumine, V., Leach, J., & Stevenson, G. (1998). Asperger Syndrome: A practical guide for teachers. London: David Fulton. Ehlers, S., & Gillberg, C. (1993). The epidemiology of Asperger Syndrome: A total population study. Journal of Child Psychology and Psychiatry, 34, 1327–1350. Ehlers, S., Gillberg, C., & Wing, L. (1999). A screening questionnaire for Asperger Syndrome and other high-functioning autistic spectrum disorders of school age children. Journal of Autism and Development Disorders, 29,129–141. Frith, U., & Happe, F. (1999). Theory of mind and self-consciousness: What is it like to be autistic? Mind & Language, 14, 1–22. Ghaziuddin, M., Weidner-Mikhail, & Ghaziuddin, N. (1998). Comorbidity of Asperger Syndrome: A preliminary report. Journal of Intellectual Disability Research, 42, 279–283. Gillberg, C. (1996). The long-term outcome of childhood empathy disorders. European Child & Adolescent Psychiatry, 5, 52–56. Hughes, C., Guth, C., Hall, S., Presley, J., Dye, M., & Byers, C. (1999). “They are my best friends:” Peer buddies promote inclusion in high school. TEACHING Exceptional Children, 31, 32–37. Klin, A., & Volkmar, F. R. (2000). Treatment and intervention guidelines for individuals with Asperger Syndrome. In A. Klin, F. R. Volkmar, & S. S. Sparrow, (Eds.), Asperger’s Syndrome (pp. 340–366). New York: Guilford. Kunce, L., & Mesibov, G. B. (1998). Educational approaches to high-functioning autism and Asperger Syndrome. In E. Schopler, G. B. Mesibov, & L. J. Kunce (Eds.), Asperger Syndrome or high-functional autism? (pp. 227–261). New York: Plenum. Ledgin, N. (2000). Diagnosing Jefferson. Arlington, TX: Future Horizons. Myles, B. S., Bock, S. J., & Simpson, R. L. (2001). Asperger Syndrome diagnostic scale. Austin, TX: Pro-Ed. Safran, J. S. (2002). Supporting students with Asperger’s Syndrome in general education. TEACHING Exceptional Children, 34(4). Safran, S. P. (2001). Asperger Syndrome: The emerging challenge to special education. Exceptional Children, 67, 151–160. Szatmari, P. (1998). Differential diagnosis of Asperger disorder. In E. Schopler, G. B. Mesibov, & L. J. Kunce (Eds.), Asperger syndrome or high-functioning autism? (pp. 61–76). New York: Plenum. Turnbull, A. P., Pereira, L., & Blue-Banning, M. (2000). Teachers as friendship facilitators: Respeto and personalismo. Teaching Exceptional Children, 32, 66–70. Williams, K. (1995). Understanding the student with Asperger’s Syndrome: Guidelines for teachers. Focus on Autistic Behavior, 10, 9–16. Wing, L. (1981). Asperger’s Syndrome: A clinical account. Psychological Medicine, 11, 115–129. Wolff, S. (1999). Loners: The life path of unusual children. London: Routledge.

Joan S. Safran is an associate professor in educational psychology and secondary education at Ohio University. Her research interests include Asperger Syndrome and collaboration and mentoring.

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Stephen P. Safran is professor of special education at Ohio University. His research interests include Asperger Syndrome and school-based positive behavior supports and disabilities in film.

Please submit manuscripts and address inquiries regarding potential topics to Kathleen C. Harris, College of Education, Arizona State University West, P. O. Box 37100, Phoenix, AZ 85069-7100; Phone: (602) 543-6339; Fax: (602) 543-6350; E-mail: [email protected]