A Large-Scale Study of the Characteristics of Asperger Syndrome

Transcription

1 Education and Training in Developmental Disabilities, 2007, 42(4), Division on Developmental Disabilities A Large-Scale Study of the Characteristics of Asperger Syndrome Brenda Smith Myles, Hyo Jung Lee, Sheila M. Smith, Kai-Chien Tien, Yu-Chi Chou, and Terri Cooper Swanson University of Kansas Jill Hudson Ohio Center for Autism and Low Incidence Abstract: This article presents the results of a large-scale study of the characteristics of 156 individuals with Asperger Syndrome (AS) ages 12 to 18. Specifically, cognitive (intellectual, empathizing, systemizing), adaptive behavior, behavior, temperament, and sensory profiles of study participants are overviewed. These characteristics are discussed as they relate to diagnostic criteria and instructional planning for adolescents with AS. The work reported here was supported by a research grant from the Organization for Autism Research. Correspondence concerning this article should be addressed to Brenda Smith Myles, Chief of Programs and Development, Ohio Center for Autism and Low Incidence, 5220 N. High Street, Building C1, Columbus, OH brenda_myles@ocali.org Asperger Syndrome (AS) is a developmental disability that is defined by severe and sustained impairment in social interaction and restrictive, repetitive patterns of behavior, interest, and activity. As first described in 1944 by an Austrian pediatrician, Hans Asperger (translated in Frith, 1991), the syndrome involved a qualitative impairment in reciprocal social interaction and behavior oddities, such as repetitive and stereotyped play, without delays in speech acquisition. Furthermore, Asperger noted that children with this disability demonstrated poor motor coordination and extreme interest in memorizing information. Although Asperger described this syndrome in the 1940s, it was not recognized by the English-speaking world until Wing introduced Asperger s work in 1981 and suggested that AS was a type of autism spectrum disorder (ASD). In 1994, the American Psychiatric Association (APA) recognized AS as a subtype of pervasive developmental disorder (PDD) with specific diagnostic criteria that differ from autism. Nevertheless, differential diagnosis between AS and autism is often problematic, and disagreements exist on the specific characteristics of AS (Barnhill, 2001; Kasari & Rotheram-Fuller, 2005; Khouzam, El-Gabalawi, Pirwani, & Priest, 2004; Myles, Barnhill, Hagiwara, Griswold, & Simpson, 2001; Woodbury- Smith, Klin, & Volkmar, 2005). For instance, according to both the International Classification of Diseases (ICD-10; World Health Organization [WHO], 1992) and the Diagnostic and Statistical Manual of Mental Disorders 4 th Edition, Text Revision (DSM-IV-TR; APA, 2000) criteria, there is no clinically significant delay in language or cognitive development. On the other hand, Gillberg and Gillberg (1989) included possible delayed language development in their criteria, whereas Szatmari, Bremner, and Nagy (1989) mentioned communication and speech impairments but without directly mentioning delays in either area. As an additional example of the continuing lack of agreement, the DSM-IV-TR listed no specific motor deficit, whereas the ICD-10 stated, This disorder is often associated with marked clumsiness (WHO, 1992, p. 377). Woodbury-Smith et al. acknowledged that the onset criteria, as currently defined, are unreliable differentiators of autism and AS, and do not reflect a differentiation between autism and AS on the basis of research on developmental pathways, but, rather, have been set arbitrarily (p. 239). In light of these inconsistencies in the diag- 448 / Education and Training in Developmental Disabilities-December 2007

2 nostic criteria for a disorder that is becoming more and more widespread, researchers are still attempting to understand and define diagnostic characteristics of AS. As a result, several additional characteristics have been suggested, including motor clumsiness (Ehlers & Gillberg, 1993; Ghaziuddin & Butler, 1998; Gillberg, 1985; Williams, 2001), academic difficulties (Myles & Simpson, 2001; Myles et al., 2001; Williams, 2001), unique sensory responses (Church, Alisanski, & Amanullah, 2000; Myles, Cook, Miller, Rinner, & Robbins, 2000; Myles & Simpson, 2001; Myles et al., 2001), emotional vulnerability and difficulties (Ghaziuddin, Weidmer-Mikhail, & Ghaziuddin, 1998; Gillberg, 1985; Ryan, 1992; Wing, 1981; Williams, 2001), and poor adaptive behavior (Myles et al., 2001). Despite a growing body of research and descriptions of symptoms from a variety of sources, an empirically valid profile of the characteristics of these individuals is urgently needed. The purpose of this study was to further describe the characteristics of AS exhibited in 156 adolescents identified with this syndrome. The investigation was a part of a larger national study conducted at a university in the midwestern United States. Method Sample and Setting Thirty-three females (21%) and 123 (79%) male youths with AS ages 12 through 18 years (mean age: years) participated in the study. Participants had received their diagnoses independently from a licensed professional (e.g., psychologist, psychiatrist) using the DSM-IV or the DSM-IV-TR criteria for AS. The diagnoses were verified using the Asperger Syndrome Diagnostic Scale (ASDS; Myles, Bock, & Simpson, 2000). Mean scores on this instrument of (SD 16.70) indicated that they were very likely to have AS. Their mean full scale intelligence quotient (FSIQ) as measured by the Wechsler Intelligence Scales (Wechsler, 1991) was (SD 22.25). Ten percent of the sample had IQs greater than 130. Three had an FSIQ in the 60s; two had a verbal IQ (VIQ) in the average range, while one had a similar performance IQ (PIQ). Eighty-six (55%) of the participants had comorbid diagnoses, which included attention deficit hyperactive disorder (ADHD; 40%), depression (12%), anxiety disorder (7%), Tourette Syndrome (3%), oppositional defiant disorder (5%), obsessive compulsive disorder (5%), and bipolar disorder (2%). Further, these adolescents were prescribed a mean of 2.89 (range 1 9) medications classified as central nervous system stimulant (49%), antidepressant (41%), antipsychotic (24%), or antihypertensive (9%). Procedure This study was part of an extensive investigation conducted through the Special Education Department in the College of Education at a large midwestern university. After receiving approval for the study from a university institutional review board, calls for participants were posted on the websites of the three major parent organizations focusing on Asperger Syndrome. Interested parties were asked to contact the authors and subsequently completed the instruments via mail and personal interview. Instruments included the following: (a) the Family Demographic Profile (Myles, Hagiwara, Carlson, & Simpson, 1999); (b) the Vineland Adaptive Behaviors Scales (VABS; Sparrow, Balla, & Cicchetti, 1984); (c) the Behavior Assessment System for Children Parent Rating System (BASC PRS; Reynolds & Kamphaus, 1992); and (d) The Early Adolescent Temperament (Ellis & Rothbart, 2001). Further, parents asked their child s teacher to complete the BASC Teacher Rating Scale (TRS; Reynolds & Kamphaus). Students were given the option to complete the (a) BASC Student Self-Report of Personality (SRP; Reynolds & Kamphuas), (b) the Empathy Quotient (EQ) Questionnaire (Baron-Cohen, 2003), (c) the Systemizing Quotient (SQ) Questionnaire (Baron-Cohen, 2003), and (d) the Adolescent/Adult Sensory Profile (Brown & Dunn, 2002) independently or through an interview with the authors. Finally, parents were asked to report their child s intellectual quotient as gathered from school or clinical records. Characteristics of Asperger Syndrome / 449

3 Instruments A brief overview of the instruments reported in this article follows: The Family Demographic Profile. This instrument (Myles et al., 1999) was developed to identify children with AS and family characteristics, including the characteristics of immediate and extended family characteristics. Empathy Quotient Questionnaire. The EQ (Baron-Cohen & 2003) is a self-report questionnaire consisting of an affective component, a cognitive component, and a mixed component. It was originally developed for use with adults of normal intelligence. This 60-item scale measures the ability to empathize. Specifically, the EQ measures an individual s drive to identify another person s emotions and thoughts and to provide an appropriate emotional response to his or her emotional state. EQ ranges from low to maximum. Systemizing Quotient Questionnaire. The SQ (Baron-Cohen, 2003) is a 60-item scale that measures an individual s drive to analyze, explore, and construct a system. Participants can receive a score in one of five categories that range from low to maximum. Vineland Adaptive Behavior Scale. The VABS (Sparrow et al., 1984) is a semi-structured interview designed to assess personal and social skills. Specifically, the VABS assesses adaptive behavior by measuring a person s performance in the following four domains: Communication Skills, Daily Living Skills, Social Skills, and Motor Skills. Standard scores are used. Behavior Assessment System for Children. The BASC (Reynolds & Kamphaus, 1992) is a multidimensional assessment used to evaluate a child s behavior, emotions, self-perceptions, and personal history. It consists of three types of tools, the Parent Rating Scales (PRS), the Teacher Rating Scales (TRS), and the Self- Report of Personality (SRP). The PRS measures a child s adaptive and problem behaviors in community and home settings whereas the TRS is a comprehensive measure of both adaptive and problem behaviors in the school setting, Both the PRS and the TRS adaptive skills composite scores consist of Leadership and Social Skills. The TRS also includes study skills in this domain. Similar to the VABS, social skills include social adaptation in communication and socialization. The SRP contains the following three subdomains, which comprise the composite score: School Maladjustment, Clinical Maladjustment, and Personal Adjustment. Clinical Scales are scored on a 5-point scale using t- scores wherein a score of 70 and above is Clinical Significant and a score of 30 and below is Very Low. The Adaptive Scales also use a 5-point scale; however, here a score of 70 and above is considered Very High and a score of 30 and below is considered Clinically Significant. Early Adolescent Temperament Questionnaire Revised. The EATQ-R (Ellis & Rothbart, 2001) assesses temperament and mood in adolescents. The Temperament Scales, which focus primarily on self-regulation, include Activation Control, Affiliation, Attention, Fear, Frustration, High-Intensity Pleasure, Inhibitory Control, and Shyness. The Behavioral Scales, which focus on temperament traits related to socialization, include Aggression and Depressive Mood. The instrument is scored using a 5-point scale wherein 1 almost always untrue and 5 almost always true. This instrument is completed by parents. Results Results of this study as they pertain to adolescents with AS will be presented below under the following major headlines: family history, cognitive profiles, adaptive behavior, behavior, temperament, and sensory issues. Family History Data on family history were collected on participants and their family members using the Family Demographic Profile (Myles et al., 1999). In total, 86 parents completed the measure. As shown in Table 1, fathers of the participants with AS, followed by mothers and paternal grandfathers were reported to have the majority of disabilities or mental health conditions presented. The most frequently occurring disabilities or mental health issues included ADHD, general behavior issues, depression, and AS. Participants siblings were primarily diag- 450 / Education and Training in Developmental Disabilities-December 2007

4 TABLE 1 Summary of Family History of Related Diagnoses or Challenges Descriptors of Diagnoses or Challenges Family Member AS ADHD BD Behavior Bipolar LD Sch Speech TS Dep Anxiety OCD PD Total Father 9 (10) 13 (15) 3 (4) 8 (9) 4 (5) 4 (5) 0 (0) 1 (1) 1 (1) 3 (3) 2 (2) 1 (1) 1 (1) 50 Mother 3 (3) 17 (20) 1 (1) 3 (3) 4 (5) 3 (5) 0 (0) 1 (1) 0 (0) 5 (6) 0 (0) 0 (0) 0 (0) 37 Paternal Grandfather 3 (3) 4 (5) 1 (1) 6 (7) 3 (3) 0 (0) 1 (1) 0 (0) 0 (0) 0 (0) 0 (0) 1 (1) 0 (0) 19 Paternal Grandmother 1 (1) 1 (1) 0 (0) 4 (5) 1 (1) 0 (0) 0 (0) 0 (0) 0 (0) 4 (5) 0 (0) 0 (0) 0 (0) 11 Maternal Grandfather 1 (1) 3 (3.49) 0 (0) 4 (5) 2 (2) 0 (0) 1 (1) 0 (0) 0 (0) 1 (1) 1 (1) 1 (1) 1 (1) 15 Maternal Grandmother 0 (0) 3 (3.49) 1 (1) 4 (5) 0 (0) 4 (5) 0 (0) 0 (0) 0 (0) 5 (6) 0 (0) 1 (1) 0 (0) 18 Total 17 (3) 41 (8) 6 (1) 29 (6) 14 (3) 11 (2) 2 ( 1) 2 ( 1) 1 ( 1) 18 (3) 3 ( 1) 4 ( 1) 2 ( 1) 150 Note. Based on a sample size of 86. Raw data are presented. Percentages appear in parentheses. Asperger syndrome (AS), Attention Deficit Hyperactive Disorder (ADHD), Behavior Disorder (BD), General Issues with Behavior (B), Depression (Dep), Learning Disability (LD), Schizophrenia (Sch), Tourette Syndrome (TS), Obsessive Compulsive Disorder (OCD), Personality Disorder (PD). Characteristics of Asperger Syndrome / 451

5 TABLE 2 Summary of Siblings History of Related Diagnoses Gender Descriptors of Diagnoses or Challenges Birth Order N M (%) F (%) AcD AS ADHD AU Bipolar LD MR Speech TS Total 1 st (42) 41 (56) 20 (27) 4 (5) 13 (18) 0 (0) 1 (1) 1 (1) 0 (0) 1 (1) 0 (0) 40 (55) 2 nd (68) 12 (32) 10 (26) 1 (3) 4 (11) 1 (3) 1 (3) 1 (3) 1 (3) 0 (0) 1 (3) 20 (53) 3 rd 16 6 (38) 10 (62) 3 (19) 0 (0) 0 (0) 1 (6) 1 (6) 1 (6) 0 (0) 0 (0) 0 (0) 6 (38) 4 th 7 4 (57) 3 (43) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) Total Note. Based on a sample size of Missing data on gender. Raw data are presented. Percentages are in parentheses. Academic Difficulties (AcD), Asperger Syndrome (AS), Attention Deficit Hyperactive Disorder (ADHD), Autism (AU), Behavior Disorder (BD), Learning Disability (LD), Mental Retardation (MR), Non-verbal Learning Disability (NLD), Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS), Schizophrenia (Sch), Tourette Syndrome (TS). nosed with academic challenges (25%), followed by ADHD (13%) and AS (4%). Data on sibling order revealed that 27% of first-born and 26% of second-born siblings had exceptionalities. By comparison, 13% of third-born siblings had disabilities whereas no reported special needs were reported among fourthborn siblings (see Table 2). Cognitive Profiles Intellectual skills. According to one of the primary diagnostic standards for AS, the DSM- IV-TR (APA, 2000), there is no clinically significant delay in cognitive development among individuals with AS. Participants with AS in the current study had a significantly higher Verbal Intellectual Quotient (VIQ) (M , SD 19.62) than Performance IQ (PIQ) (M 99.42, SD 19.78), t(59) 4.054, p.001 (.000). Both of these scores, as well as participants FSIQ (M , SD 22.25) fell in the Average range. Social cognitive skills. According to Baron- Cohen (2003), the primary difference between male and female brains is related to empathizing and systemizing. Empathizing, as a prominent feature of the female brain, is the drive to identify others emotions and thoughts, and to respond to these in socially appropriate ways. Thus, empathizing allows people to understand others and to predict the social world around them. Unlike empathizing, systemizing is the drive to analyze, explore, and construct a system in order to understand the basic principles and rules of the behavior system and control it (Baron- Cohen, Richler, Bisarya, Gurunathan, & Wheelwright, 2003). As reported by the adolescents in this study, no significant difference was found between the male and female groups, t(85) 1.149, p.05 (.151). Both groups scores (females: M 30.71, SD 13.82; males: M 25.55, SD 11.35) were categorized as low on the EQ scale. Similar to findings related to the EQ scale, no significant differences were noted between the systemizing skills of males (M 28.77, SD 11.84) and females (M 24.52, SD 11.25), both groups scoring in the Average range on the SQ scale. Finally, the relationship between scores on the EQ and SQ was also investigated. The EQ and the SQ of participants with AS were significantly positively correlated with each other (r.340, p.01). Adaptive Behavior According to DSM-IV-TR (APA, 2000), individuals with AS demonstrate no clinically significant delay in adaptive behavior other than in social interaction. In order to assess the adaptive behaviors of participants with AS, the 452 / Education and Training in Developmental Disabilities-December 2007

6 current study utilized two assessment tools: the VABS (Sparrow et al., 1984) and the BASC (Reynolds & Kamphaus, 1992). Vineland Adaptive Behavior Scales. Results on the VABS revealed that the participants with AS had low or moderately low levels of adaptive skills across all domains, including communication (moderately low; M 76.10, SD 21.33), daily living skills (low; M 67.75, SD 18.26), socialization (low; M 62.27, SD 20.25), adaptive composite score (low; M 64.28, SD 19.42), and maladaptive behavior (low; M 21.36, SD 8.43). Behavior Assessment System for Children. The BASC s Adaptive Skills subdomain, which is composed of Leadership, Social Skills, and Study Skills (the latter on the TRS version for educators only), was also used to assess adaptive behaviors. Parents reported that their children s adaptive behavior skills were in the At-Risk range while the teachers indicated that their students skills were in the Average range. A significant difference was found between the two groups perceptions on Leadership, t(67) 6.718, p.001 (.000), Social Skills, t(67) 8.122, p.001 (.000), and Composite Score, t(67) 9.700, p.001 (.000). Behavior The BASC was also used to assess behavior issues in the adolescents with AS as perceived by parents, teachers, and the students themselves. Externalizing Problems Composite. A significant difference existed between parents and teachers perceptions of Hyperactivity, Aggression, and Conduct Problems, t(67) 6.725, p.001 (.000). Specifically, parents reported that their adolescent obtained an At-Risk Externalizing Problems Composite (M 60.96, SD 12.94). In contrast, teachers indicated that their student performed in the Average range (M 51.53, SD 9.04). In the three subscales comprising the Externalizing Problems Composite, parents reported their adolescent s functioning as being in the At-Risk range in Hyperactivity (M 68.35, SD 16.91), and in the Average range for Aggression (M 56.96, SD 11.71) and Conduct Problems (M 52.49, SD 10.61). In contrast, teachers data indicated that Attention (M 56.40, SD 10.38), Hyperactivity (M 54.88, SD 12.15), and Conduct Problems (M 46.50, SD 5.31) were all perceived to be in the Average range. Internalizing Problems Composite. Parents and teachers data differed significantly with regard to the Internalizing Problems Composite, t(67) 3.062, p.005 (.003). Specifically, parents reported that their adolescent children were At-Risk in Anxiety (M 65.38, SD 12.94) and Depression (M 65.04, SD 16.25), but Average in Somatization (M 55.09, SD 13.89). Teachers, on the other hand, considered their students to be Average in all the subscales, with ratings similar to parents in Somatization (see Table 3). School Problems Composite. The BASC teacher rating scale contains three domains that assess school problems; the parent rating scale contains only one subscale (Attention Problems). On the School Problems Composite and its subscales, Learning Problems and Attention Problems, students with AS were rated by their teachers as Average. In contrast, parents indicated their adolescent were At- Risk for Attention Problems (M 65.01, SD 10.67). Behavioral Symptoms Index. A significant difference was found in parents and teachers perceptions of the overall behavior of adolescents with AS, t(66) 5.96, p.000 (.000). Parents and teachers concurred in their ratings for Atypicality, both indicating that the adolescent was At Risk. Further, parents reported their children were in the Clinically Significant range for Withdrawal (M 72.40, SD 15.44), whereas teacher ratings fell within the At-Risk range (M 60.54, SD 14.46) (see Table 3). Item analysis. Both parents and professionals have voiced concern regarding specific areas of behavior among individuals with AS. To further investigate these areas, items related to Aggression, Anxiety, Atypicality, Depression, and Withdrawal were analyzed (see Table 4). Items that received a mean score of at least 2.5 on a scale of 1 to 4 (1 never, 2 sometimes, 3 often, 4 always) are shown, as these are considered to be areas of concern Reynolds and Kamphaus (1992). BASC Self-Report Profile. Unlike the Parent Rating Scales and the Teacher Rating Scales, which allow for direct comparison across the Characteristics of Asperger Syndrome / 453

7 TABLE 3 Descriptive Data on BASC PRS and TRS Parent Rating Scale Teacher Rating Scale Scales and Composites M SD M SD Aggression Hyperactivity Conduct Problems Externalizing Problems Composite Anxiety Depression Somatization Internalizing Problems Composite Attention Problems Learning Problems School Problems Composite Atypicality Withdrawal Behavioral Symptoms Index Leadership Social Skills Study Skills Adaptive Skills Composite Note. The Levene s Test was significant at the.05 level for the Externalizing Problems Composite and the subscales of Hyperactivity and Conduct Problems; therefore scores for equal variance not assumed were used. two types of raters, the Student Self-Report Profile (SRP) does not permit such analysis. That is, students self-evaluations do not allow for comparisons with adults perceptions. As shown in Table 5, students with AS perceived themselves to be similar to neurotypical peers in all areas. Temperament Parents completed the EATQ-R on their adolescent with AS to assess his or her temperament using eight subscales and behaviors divided into two domains. TABLE 4 Item Analysis of BASC Aggression, Anxiety, Atypicality, Depression, and Withdrawal Items PRS TRS Aggression Argues when denied own way 2.78 Anxiety Is nervous 2.65 Says, I m not very good at this Worries 2.81 Depression Is easily upset 2.74 Withdrawal Avoids competing with other adolescents 2.56 Has trouble making new friends / Education and Training in Developmental Disabilities-December 2007

8 TABLE 5 Descriptive Data on BASC-SRP Scales and Composites M SD Attitude to School Attitude to Teachers Sensation Seeking School Maladjustment Composite Anxiety Atypicality Locus of Control Social Stress Somatization Clinical Maladjustment Composite Depression Sense of Inadequacy Interpersonal Relations Relations with Parents Self-Esteem Self-Reliance Personal Adjustment Composite Emotional Symptoms Index Temperament Scales. Parents reported higher scores on the temperament scales of Affiliation (M 2.09, SD.75), Fear (M 2.95, SD.79), Frustration (M 3.94, SD.66), and Shyness (M 3.00, SD 1.05). The lowest scores were assigned to the subscale of Activation Control (M 2.09, SD.75). All scale scores appear in Table 6. Behavioral Scales. The EATQ-R Behavioral Scales include Aggression and Depressive Mood (see Table 6). Parents mean scores were above those of peers in the norming sample in the area of Aggression (M 3.09, SD.84) and Depressive Mood (M 2.99, SD.62). Item analysis. Just as with the BASC, an analysis on items related to Aggression, Depressive Mood, Frustration, Inhibitory Control, and Shyness was conducted (see Table 7). Items that received a mean score of at least 3.0 TABLE 6 Descriptive Data on EATQ-R Scales M SD Temperament Scales Activation Control Affiliation Attention Fear Frustration Surgency/High-Intensity Pleasure Inhibitory Control Shyness Behavioral Scales Aggression Depressive Mood Characteristics of Asperger Syndrome / 455

9 TABLE 7 Item Analysis of EATQ-R Items M SD Aggression When angry at someone, says thing s/he knows will hurt that person s feelings If very angry, might hit someone Tends to be rude to people s/he doesn t like Tends to try to blame mistakes on someone else Slams doors when angry Depressive Mood Often does not seem to enjoy things as much as his/her friends Is sad more often than other people realize Sometimes seems sad even when s/he should be enjoying her/himself like at Christmas or on a trip Frustration Is annoyed by little things other kids do Gets very irritated when someone criticizes him/her Gets irritated when I will not take him/her someplace s/he wants to go Gets irritated when s/he has to stop doing something s/he is enjoying Hates it when people don t agree with him/her Gets very frustrated when s/he makes a mistake in his/her schoolwork Inhibitory Control Has a hard time waiting his/her turn to speak when excited Shyness Can generally think of something to say, even to strangers Is not shy on a scale of 1 to 5 (1 almost always untrue, 2 usually untrue, 3 sometimes true, sometimes untrue, 4 usually true, 5 almost always true) are shown. Sensory Issues Although not mentioned as diagnostic criteria in the DSM-IV-TR (APA, 2000), sensory issues have been reported as inherent in AS (cf. Shore, 2003; Willey, 1999). In the current study, 94 adolescents with AS completed the Adolescent and Adult Sensory Profile (Brown & Dunn, 2002) as a measure of their sensory challenges. Results showed that in Sensory Sensitivity (M 41.48, SD 9.31) and Sensation Avoiding (M 45.23, SD 12.36), this population scored More Than Most People. However, their Low Registration (M 40.30, SD 8.35) and Sensation Seeking (M 42.39, SD 9.58) scores were Similar to Most People. Discussion Based on the findings of the current study, a picture of the adolescent with AS emerges. Overall, the adolescents with AS who participated in this study had an average FSIQ consistent with that found in other research (cf., Barnhill, Hagiwara, Myles, & Simpson, 2000; Ghaziuddin & Mountain-Kimchi, 2004; Koyama, Tachimori, Osada, Takeda, & Kurita, 2007) and the DSM-IV-TR criteria (APA, 2000). However, three individuals identified as having AS by medical professionals did not have an FSIQ in the Average range; rather their PIQ or VIQ was in the Average range. 456 / Education and Training in Developmental Disabilities-December 2007

10 Giftedness appears to be a characteristic of many individuals with AS although this study revealed that a smaller number of adolescents possessed this cognitive characteristic than found in a previous a study (Barnhill et al., 2000). Despite having average to above-average IQ, individuals with AS tend to have difficulties empathizing with others because of a reported lack of theory of mind or social cognition (Carothers & Taylor, 2004; Davies, Bishop, Manstead, & Tantum, 1994), consistent with the research of Baron-Cohen et al. (2003). While it has been found that individuals with AS have a strength in analyzing, exploring, categorizing, or constructing systems and that this skill is often found to be negatively correlated with empathizing (Baron-Cohen et al.), the adolescents in the current study demonstrated only average skills in this area. Previous research by Baron-Cohen and colleagues using the EQ and SQ with adults with AS has led to the conjecture that while empathizing is a challenge from individuals with AS from adolescence to adulthood, systemizing is a skill that develops over time. Understanding the role of empathizing and systemizing in individuals with AS may allow educators to use the average systemizing skills of individuals with AS to teach concepts, including nonverbal language and theory of mind. As demonstrated in this study, the gap between IQ and the adaptive behavior skills of individuals with AS can be marked. This finding is supported by other researchers (see Lee & Park, in press, for a review of the literature on this topic). In short, studies on the adaptive behaviors of individuals with AS suggest that challenges in this area are part of the characteristics of AS despite their exclusion from current diagnostic criteria. Again, this finding has tremendous ramifications for instruction. That is, while daily living skills are often taught to individuals with cognitive disabilities, instruction in this area needs to be expanded to include individuals with AS, despite their average to above-average IQ, to ensure that they can live and work independently with success. In terms of the behavioral issues of individuals with AS, the research is equivocal in that parents and educators disagree on the presence of internalizing or externalizing behaviors (Barnhill et al., 2000). In brief, parents tend to identify problem behaviors whereas teachers do not. The reasons for these perceived differences between the two groups are open to speculation. Do data reflect actual behavioral differences at home and school or differences of perception? Do the demands of the home and school differ, such that behavioral issues exist in one environment and not the other? Or do adolescents with AS hold it together in a stressful school environment only to exhibit behavior issues in the confines of a safe environment the home? Additional research is needed to answer these questions. Of concern is the finding that adolescents did not report experiencing behavior challenges. Consistent with previous research (Barnhill, Hagiwara, Myles, Simpson, Brick, et al., 2000), these data suggest a lack of awareness or denial by participants. As with the interpretations of other data in this study, their meaning awaits further research. Finally, adolescents sensory sensitivity suggests that they are relatively more distractible and hyperactive in response to sensory stimuli than neurotypical peers, a finding that appears consistent with parents and teachers reports of hyperactivity. This may result in a failure to complete tasks due to switched attention to non-task related stimuli during work time. In addition, adolescents in this study were sensitive to environmental input, and reported attempting to reduce incoming stimuli, often through withdrawal or resistance. Behavioral manifestations in this regard include having frequent meltdowns or refusing to participate in transitions, or novel or unpredictable activities. Such reactions may be directly related to parents reports of their children s behavior. That is, behavioral issues experienced by individuals with AS may have a sensory base and, thus, may require sensory interventions (Dunn, Myles, & Orr, 2002; Myles et al., 2004). Overall, this research yields a profile of the complexity of AS as expressed by adolescents: an average to above-average IQ with adaptive behavior skills that are not commensurate with each other; a lack of ability to empathize with others as well as a deficit in recognizing their own needs; behavioral issues, both overt and covert, that may be related to sensory concerns; and average skills in providing Characteristics of Asperger Syndrome / 457

11 themselves with much-needed order and predictability. Research in the field of AS is still in its early stages, and this is particularly true in terms of our understanding of the characteristics of individuals with AS. Clearly, more research on this topic is needed to develop an empirical foundation for understanding students with AS as an essential component of improving their educational experiences. While the sample size of the present study as well as its nature as a volunteer sample limits generalization, it is hoped that these findings will serve as one facet leading to more positive outcomes for individuals with AS. References American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4 th ed.). Washington, DC: Author. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4 th ed., text revision). Washington, DC: Author. Asperger, H. (1991). Autistic psychopathy in childhood (U. Frith, Trans.). In U. Frith (Ed.), Autism and Asperger syndrome (pp ). New York: Cambridge University Press. (Original work published 1944). Barnhill, G. P. (2001). Social attributions and depression in adolescents with Asperger Syndrome. Focus on Autism and Other Developmental Disabilities, 16, Barnhill, G., Hagiwara, T., Myles, B. S., & Simpson, R. L. (2000). Asperger Syndrome: A study of the cognitive profiles of 37 children and adolescents. Focus on Autism and Other Developmental Disabilities, 15, Barnhill, G. P., Hagiwara, T., Myles, B. S., Simpson, R. L., Brick, M. L., & Griswold, D. E. (2000). Parent, teacher, and self-report of problem and adaptive behaviors in children and adolescents with Asperger Syndrome. Diagnostique, 25, Baron-Cohen, S. (2003). The essential difference: Male and female brains and the truth about autism. Cambridge, MA: Basic Books. Baron-Cohen, S., & Wheelwright, S. (2004). The empathy quotient: An investigation of adults with Asperger syndrome or high-functioning autism, and normal sex differences. Journal of Autism and Developmental Disorders, 34, Baron-Cohen, S., Richler, J., Bisarya, D., Gurunathan, N., & Wheelwright, S. (2003). The systemizing quotient: An investigation of adults with Asperger syndrome or high-functioning autism, and normal sex differences. In U. Frith & E. Hill (Eds.), Autism: Mind and brain (pp ). Oxford, UK: Oxford University Press. Brown, C. E., & Dunn, W. (2002). Adolescent/Adult Sensory Profile: User s manual. San Antonio, TX: The Psychological Corporation. Carothers, D., & Taylor, R. (2004). Social cognitive processing in elementary school children with Asperger syndrome. Education and Training in Developmental Disabilities, 39, Church, C., Alisanski, S., & Amanullah, S. (2000). The social, behavioral, and academic experiences of children with Asperger syndrome. Focus on Autism and Other Developmental Disabilities, 15, Davies, S., Bishop, D., Manstead, A.S.R., & Tantam, D. (1994). Face perception in children with autism and Asperger s syndrome. Journal of Child Psychology and Psychiatry, 35, Dunn, W., Myles, B. S., & Orr, S. (2002). Sensory processing issues associated with Asperger syndrome: A preliminary investigation. American Journal of Occupational Therapy, 56, Ehlers, S., & Gilberg, C. (1993). The epidemiology of Asperger syndrome: A total population study. Journal of Child Psychology and Psychiatry, 34, Ellis, L. K., & Rothbart, M. K. (2001). Revision of the early adolescent temperament questionnaire. Poster presented at the 2001 Biennial Meeting of the Society for Research in Child Development, Minneapolis, MN. Ghaziuddin, M., & Butler, E. (1998). Clumsiness in autism and Asperger syndrome: A further report. Journal of Intellectual Ability Research, 42, Ghaziuddin M., & Mountain-Kimchi K. (2004). Defining the intellectual profile of Asperger syndrome: Comparison with high-functioning autism. Journal of Autism and Developmental Disorders, 34, Ghaziuddin, M., Weidmer-Mikhail, F., & Ghazziuddin, N. (1998). Comorbidity of Asperger syndrome: A preliminary report. Journal of Intellectual Disability Research, 42, Gillberg, C. (1985). Asperger syndrome in 23 Swedish children. Developmental Medicine and Child Neurology, 31, Gillberg, I. C., & Gillberg, C. (1989). Asperger syndrome Some epidemiological considerations: A research note. Journal of Child Psychology and Psychiatry, 30, Kasari, C., & Rotheram-Fuller, E. (2005). Current trends in psychological research on children with high-functioning autism and Asperger disorder. Current Opinion in Psychiatry, 18, Khouzam, H. R., El-Gabalawi, F., Pirwani, N., & Priest, F. (2004). Asperger s disorder: A review of its diagnosis and treatment. Comprehensive Psychiatry, 45, / Education and Training in Developmental Disabilities-December 2007

12 Koyama, T., Tachimori, H., Osada, H., Takeda, T., & Kurita, H. (2007). Cognitive and symptom profiles in Asperger s syndrome and high-functioning autism. Psychiatry and Clinical Neurosciences, 61, Lee, H. J., & Park, H. R. (2007). Integrate review of literature on the adaptive behavior of individuals with Asperger Syndrome. Remedial and Special Education, 28, Myles, B. S., Barnhill, G. P., Hagiwara, T., Griswold, D. E., & Simpson, R. L. (2001). A synthesis of studies on the intellectual, academic, social/emotional and sensory characteristics of children and youth with Asperger Syndrome. Education and Training in Mental Retardation and Developmental Disabilities, 36, Myles, B. S., Bock, S. J., & Simpson, R. L. (2000). Asperger Syndrome Diagnostic Scale. Austin, TX: Pro- Ed. Myles, B. S., Cook, K. T., Miller, N. F., Rinner, L., & Robbins, L. A. (2000). Asperger Syndrome and sensory issue: Practical solutions for making sense of the world. Shawnee Mission, KS: Autism Asperger Publishing Company. Myles, B. S., Hagiwara, T., Carlson, J. K., & Simpson, R. L. (1999). Family Demographic Profile. Unpublished manuscript. Myles, B. S., Hagiwara, T., Dunn, W., Rinner, L., Reese, M., Huggins, A., Becker, S. (2004). Sensory issues in children with Asperger syndrome and autism. Education and Training in Developmental Disabilities, 39, Myles, B. S., & Simpson, R. L. (2001). Asperger syndrome: A guide for educators and practitioners (2 nd ed.). Austin, TX: Pro-Ed. Reynolds, C. R., & Kamphaus, R. W. (1992). Behavior Assessment System for Children. Circle Pines, MN: American Guidance Services. Rothbart, M. K. (2006). Early Adolescent Temperament Questionnaire (EATQ-R). Retrieved November 12, 2006, from sputnam/ rothbart-temperament-questionnaires/instrumentdescriptions/early-adolescent-temperament.html Ryan, R. M. (1992). Treatment resistant chronic mental illness: Is it Asperger s syndrome: Hospital and Community Psychiatry, 43, Shore, S. (2003). Beyond the wall: Personal experiences with autism and Asperger Syndrome (2 nd ed.). Shawnee Mission, KS: Autism Asperger Publishing Company. Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984). Vineland Adaptive Behavior Scales: Interview edition survey form manual. Circle Pines, MN: American Guidance Service. Szatmari, P., Bremner, R., & Nagy, J. (1989). Asperger s syndrome and autism: Comparison of early history and outcome. Developmental Medicine and Child Neurology, 31, Wechsler, D. (1991). Wechsler Intelligence Scale for Children Third Edition. New York: Psychological Corp. San Antonio, TX: The Psychological Corporation. Willey, L. H. (1999). Pretending to be normal. London, England: Jessica Kingsley Publishers, Ltd. Williams, K. (2001). Understanding the student with Asperger Syndrome: Guideline for teachers. Intervention in School and Clinic, 36, Wing, L. (1981). Asperger s syndrome: A clinical account. Psychological Medicine, 11, Woodbury-Smith, M., Klin, A., & Volkmar, F. (2005). Asperger s syndrome: A comparison of clinical diagnoses and those made according to the ICD-10 and DSM-IV. Journal of Autism and Developmental Disorders, 35, World Health Organization. (1992). The ICD-10 classification of mental and behavioral disorders: Clinical descriptions and diagnostic guidelines. Geneva, Switzerland: Author. Characteristics of Asperger Syndrome / 459