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The Effects of a Social Story Intervention on Social Skills Acquisition in Adolescents with Asperger's Syndrome

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The Effects of a Social Story Intervention on Social Skills Acquisition in Adolescents with Asperger's Syndrome
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2008

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Adolescents ( jstor )
Asperger syndrome ( jstor )
Autistic disorder ( jstor )
Conversation ( jstor )
Nursing ( jstor )
Parents ( jstor )
Research studies ( jstor )
Social behavior ( jstor )
Social interaction ( jstor )
Social skills ( jstor )

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THE EFFECTS OF A SOCIAL STORY INTERVENTION ON SOCIAL SKILLS ACQUISITION IN ADOLESCENTS WITH ASPERGERÂ’S SYNDROME By KATHLEEN PURCELL WASHBURN A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2006

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Copyright 2006 by Kathleen Purcell Washburn

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This document is dedicated to my family.

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iv ACKNOWLEDGMENTS I would first like to thank my committee fo r being so patient with my frustrating time line. Dr. Jennifer Elder was always avai lable to guide and advise, and Drs. Mary Kay Dykes and Lara Beebe were inspirati onal in those moments when the process seemed so overwhelming. Dr. Maureen Conroy was the quiet force who made me realize that the process itself was to be enjoyed, and gave me a renewed appreciation for those teachers who have given so much of their tim e and effort to teach and encourage my own children. I would also like to acknowledge Drs. Afua Arhin, Eileen Cormier, and Debbie White for being available to console, direct, and listen, and for making sure that I still held on to my sense of humor during each st age of this process. They were always available, regardless of the time of day, and they spent many late ni ght hours assuring me that there was a light at the end of the tunnel. I would be remiss if I did not acknowledge the support of my family. First, I have to thank my father, Captain William C. Purcell, USN RET, for not completing my homework when I was young. Being able to wr ite complete sentences and putting those sentences into paragraphs that make sense has made this research process much less difficult than it could have been. But it wa s his example of purs uing graduate school while still making time to be a superb na val officer, a supportive parent, and a loving husband that encouraged me to persevere until I finally finished. It is for him I will walk this final time.

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v My mother, Betty Purcell, has also been available on a mome ntÂ’s notice to be chauffeur, cook, baby-sitter, and errand runner. Never once did she ever complain or refuse to help out, and I am so grateful my children have been able to spend quality time with her and my father, as they love them unconditionally. My children, Zachary, TJ, and Tucker, do not remember a time when their mother was not in school, as they we re very young when I first en tered graduate school. They have always been extremely understanding ab out my academic responsibilities, and are looking forward to the future when we can go on vacation without taking my laptop. I am so blessed because they have been both tole rant and compassionate when I was trying to meet deadlines, as I seemed to always ha ve too many obligations and too little time. Finally, I have to thank my husband, Kevi n, for giving me the space and time to pursue my dream. He has spent many years doing the majority of the household chores and taking care of numerous family obliga tions, but has rarely complained and has always been my best friend, my rock of support, and the love of my life. I do not know if I could have completed this endeavor without him by my side.

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vi TABLE OF CONTENTS page ACKNOWLEDGMENTS.................................................................................................iv LIST OF TABLES...............................................................................................................x LIST OF FIGURES...........................................................................................................xi ABSTRACT......................................................................................................................x ii CHAPTER 1 INTRODUCTION........................................................................................................1 Historical Background of AS........................................................................................1 The Origins of AspergerÂ’s Syndrome....................................................................1 Hans Asperger................................................................................................1 Introduction in North America.......................................................................2 Diagnostic criteria..........................................................................................4 Epidemiology.................................................................................................5 Comorbidities.................................................................................................7 Specific Social Impairments of AS.......................................................................7 Significance of the Study..............................................................................................9 Purpose of the Study...................................................................................................13 Theoretical Framework...............................................................................................13 2 REVIEW OF THE LITERATURE............................................................................17 Historical Overview: From Autism to AspergerÂ’s Syndrome....................................17 Autism.................................................................................................................17 Autistic Spectrum Disorders................................................................................18 AspergerÂ’s Syndrome..........................................................................................19 Interventions for Social Impairment...........................................................................20 Social Stories..............................................................................................................24 Studies using a Case Study Design.....................................................................24 Studies using an A-B Design...............................................................................26 Studies using a Reversal or Withdrawal Design.................................................28 Studies using a Multip le Baseline Design...........................................................36 Studies using Traditional, Group Comp arison, Quasi-Experimental Designs....42 Summary.....................................................................................................................46

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vii 3 METHODOLOGY.....................................................................................................49 Rationale for the Use of SS........................................................................................49 Operational Definitions of Dependent Variables.......................................................50 Turn-Taking.........................................................................................................50 Interrupting..........................................................................................................51 Design......................................................................................................................... 51 Rationale for the Use of the Single Subject Experimental Design......................51 Rationale for the Multiple Baseline Design........................................................54 Participant Selection...................................................................................................57 Inclusion Criteria.................................................................................................57 Exclusion Criteria................................................................................................58 Discussion of Participants...................................................................................58 Participant 1 – “Adam”................................................................................59 Participant 2 – “Ben”....................................................................................60 Participants 3 and 4 – “Charlie” and “Danny”.............................................61 Setting........................................................................................................................ .63 Materials.....................................................................................................................6 3 Materials for Selection of Target Behaviors.......................................................63 Materials for Data Collection..............................................................................66 Materials for the Intervention..............................................................................66 Description of the Social Story Intervention.......................................................66 Procedure....................................................................................................................68 Selection of Participants......................................................................................68 Baseline...............................................................................................................71 Intervention Phase...............................................................................................71 Fading Phase and Maintenance...........................................................................73 Follow-up............................................................................................................73 Data Collection...........................................................................................................74 IOA............................................................................................................................ .75 Treatment Integrity.....................................................................................................76 Social Validity............................................................................................................76 Data Analysis..............................................................................................................76 4 RESULTS...................................................................................................................77 Participant 1 Adam...................................................................................................77 Targeted Behavior Interrupting.........................................................................77 Prompts................................................................................................................78 Participant 2 – Ben......................................................................................................79 Targeted Behavior – Turn Taking.......................................................................79 Prompts................................................................................................................79 Participant 3 – Charlie................................................................................................80 Targeted Behavior – Turn-taking........................................................................80 Prompts................................................................................................................80 Participant 4 – Danny.................................................................................................81 Targeted Behavior Interrupting.........................................................................81

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viii Prompts................................................................................................................82 Summary of Intervention Results...............................................................................82 Inter-observer Agreement...........................................................................................83 Treatment Integrity.....................................................................................................85 Social Validity............................................................................................................86 5 DISCUSSION.............................................................................................................97 Overview.....................................................................................................................97 Discussion of the Results............................................................................................98 Adam...................................................................................................................98 Ben.......................................................................................................................99 Charlie...............................................................................................................101 Danny................................................................................................................102 Limitations of the Study...........................................................................................104 Recommendations for Future Research....................................................................106 Implications for Clinical Practice.............................................................................107 APPENDIX A INFORMED CONSENT..........................................................................................111 B CAREGIVER QUESTIONNAIRE FOR ASSESSMENT OF SOCIAL BEHAVIORS...........................................................................................................122 C DATA COLLECTION SHEET................................................................................123 D TREATMENT INTEGRITY....................................................................................125 E SOCIAL VALIDITY QUESTIONNAIRE...............................................................126 F ADAM’S SOCIAL STORY INTERRUPTING.....................................................127 Page 1........................................................................................................................1 27 Page 2........................................................................................................................1 27 Page 3........................................................................................................................1 27 Page 4........................................................................................................................1 27 Page 5........................................................................................................................1 28 Page 6........................................................................................................................1 28 Page 7........................................................................................................................1 28 Page 8........................................................................................................................1 28 G BEN’S SOCIAL STORY – TURN TAKING..........................................................129 Page 1........................................................................................................................1 29 Page 2........................................................................................................................1 29 Page 3........................................................................................................................1 29 Page 4........................................................................................................................1 30

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ix Page 5........................................................................................................................1 30 Page 6........................................................................................................................1 30 Page 7........................................................................................................................1 30 Page 8........................................................................................................................1 31 Page 9........................................................................................................................1 31 Page 10......................................................................................................................13 1 H CHARLIE’S SOCIAL STORY TURN TAKING.................................................132 Page 1........................................................................................................................1 32 Page 2........................................................................................................................1 32 Page 3........................................................................................................................1 32 Page 4........................................................................................................................1 33 Page 5........................................................................................................................1 33 Page 6........................................................................................................................1 33 Page 7........................................................................................................................1 33 Page 8........................................................................................................................1 34 Page 9........................................................................................................................1 34 I DANNY’S SOCIAL STOR YINTERRUPTING...................................................135 Page 1........................................................................................................................1 35 Page 2........................................................................................................................1 35 Page 3........................................................................................................................1 35 Page 4........................................................................................................................1 36 Page 5........................................................................................................................1 36 Page 6........................................................................................................................1 36 Page 7........................................................................................................................1 36 Page 8........................................................................................................................1 36 J EDDIE’S SOCIAL STORY – PERSEVERATION.................................................138 Page 1........................................................................................................................1 38 Page 2........................................................................................................................1 38 Page 3........................................................................................................................1 38 Page 4........................................................................................................................1 39 Page 5........................................................................................................................1 39 Page 6........................................................................................................................1 39 Page 7........................................................................................................................1 39 Page 8........................................................................................................................1 40 LIST OF REFERENCES.................................................................................................141 BIOGRAPHICAL SKETCH...........................................................................................153

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x LIST OF TABLES Table page 3-1 Correspondence between Instrumenta tion and Sample Characteristics...................64 3-2 Timeline for Research Study....................................................................................69 4-1 Interobserver Agreement (Percentage) per Session.................................................84 4-2 Treatment Integrity (Percentage) per Session..........................................................85

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xi LIST OF FIGURES Figure page 4-1 Graph of AdamÂ’s Targeted Behavior.......................................................................88 4-2 Graph of AdamÂ’s Prompts........................................................................................89 4-3 Graph of BenÂ’s Targeted Behavior..........................................................................90 4-4 Graph of BenÂ’s Prompts...........................................................................................91 4-5 Graph of CharlieÂ’ s Targeted Behavior.....................................................................92 4.7 Graph of DannyÂ’s Targeted Behavior......................................................................94 4-8 Graph of DannyÂ’s Prompts.......................................................................................95 4-9 Comparison of the effects of th e SS intervention acr oss participants......................96 5-1 The effects of BenÂ’s SS for turn taki ng on the frequency of BenÂ’s interruptions..100 5-2 DannyÂ’s response to CharlieÂ’s SS for turn taking..................................................103

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xii Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy THE EFFECTS OF A SOCIAL STORY INTERVENTION ON SOCIAL SKILLS ACQUISITION IN ADOLESCENTS WITH ASPERGERÂ’S SYNDROME By Kathleen Purcell Washburn August 2006 Chair: Jennifer H. Elder Major Department: Nursing Adolescence is a difficult period of transi tion for most children, but for those with AspergerÂ’s syndrome (AS), deficits in so cial competence often prevent them from procuring those social relationshi ps that will help them secure lasting friendships, loving relationships with significant others, or profitable employment . These deficits in social functioning and interaction are cen tral features of AS, so teaching adolescents with AS to respond and interact appropriately with their peers is a prior ity for the social health of these children. Social stories (SS) are visual supports that appear to be promising interventions for modifying behaviors and improving social skills in younger children with autism, but there is a significant lack of research involving adolescents, or those with AS. The purpose of this study was to assess th e effectiveness of SS to teach social interaction skills to adolescents with AS. Four male adolescents par ticipated in the study. Single subject methodology, with a multiple ba seline across participants approach, was

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xiii used to evaluate intra-subject changes in targeted social behaviors. These targeted behaviors were operationally defined for st udy, and included interrupting and turn-taking. Data were coded daily and evaluated graphically via visual analysis in terms of a) the magnitude of the response of the dependent va riable to the independe nt variable, b) the percentage of overlap, and c) the trend analysis. The number of visual, tactile, and verbal prompts needed to illicit the desired beha viors were also count ed, with the number graphed for visual analysis. Graphic analysis of the data revealed th at the SS intervention was effective in reducing the targeted behaviors for all of the participants once the intervention was introduced, with this reduction in behavi ors maintained during the fading phase. However, these behaviors did not maintain at the one-month follow-up for two of the participants. Nursing needs to become more involved in the promotion, attainment, and maintenance of social health, encouraging the development of pr oductive relationships and healthy self-esteems. Recommendations for future research include the inclusion of female participants, generalization probes, the use of self-management techniques to reinforce the impact of the social story, and the involvement of typically developed peers for practice and mentoring.

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1 CHAPTER 1 INTRODUCTION This is the first of five chapters; the historical background of AspergerÂ’s syndrome (AS) will be summarized, and the ep idemiology and co-morbidities of this disorder will be explicated. The significance and purpose of this study will then be delineated, and the chapter will be conc luded by a discussion of the theoretical framework. The second chapter will revi ew the origins of AS, and the recent literature pertaining to the more common interventions used to improve social skills for individuals with AS, and for the intervention of social st ories (SS) specifically. The third chapter will describe the methodology of the study, while the fourth chapter will de tail the results of the study. Lastly, the fifth chapter will pr ovide a discussion of conclusions and limitations of the study, provide suggestions and directions for future research, and explicate implications for nursing practice. Historical Background of AS The Origins of AspergerÂ’s Syndrome Hans Asperger. Hans Asperger was a physician in Germany during World War II, specializing in pediatric psychiatry. He was drawn to those children, diagnosed previously with severely impaired personality disorders, who were considered difficult and withdrawn. He was interested particularly in the treatment they received within a therapeutic environment known as remedial pedagogy . This environment of psychiatric care for children was biologically based, a nd included a daily program of lessons and

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2 play. Asperger began to obser ve the behaviors of a group of children who appeared to have similar traits, and concluded that th ey suffered from an inherited personality disorder that he termed autistic psychopathy (Frith, 1991). Asperger published these findings in his dissertation in 1944, but distribution into scientific journals was limited because of Nazi control. During the 1950Â’s and 1960Â’s, exposure was limited to clini cal psychiatry in German and Dutch countries. By the 1970Â’s, AS was a common diagnostic category used in the realm of psychiatry, but only within the United Kingdom and Europe (Wing, 1998). In North America, KannerÂ’s description of this disorder continued to be more commonly used. AspergerÂ’s observation di ffered from KannerÂ’s in several ways, including more common motor deficits, less delay or no delay in the onset of speech, normal or high intelligence, a lag in dia gnosis based on fewer eccentricities observed early in life, and a possible genetic link to fathers (Grossman, Klin, Carter, & Volkmar, 2000). Introduction in North America. In 1981, Wing was successful in introducing the syndrome to the United States. She first used the term AS in a published document, in which she hypothesized that AS was a varian t of autism. She based this assumption on a comparison of her 35 case studies of individu als with autistic sp ectrum disorders (ASD) with AspergerÂ’s descriptions and case studies of his patients. She outlined the epidemiology, clinical features, differential diagnosis, and management of AS, intending to gain recognition for those individuals who did not fit KannerÂ’s de scription of autism. She listed six diagnostic criteria based on Aspe rgerÂ’s original work, including a) no delay in speech, but with odd content, and pedantic and stereotyped patterns; b) little facial

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3 expression, monotone voice, and inappropriate gestures; c) ina ppropriate social interactions, no reciprocity, and a noticeable la ck of empathy; d) resistance to change, with an enjoyment of recurring events and repe titive activities; e) clumsiness apparent in gross movements, odd posture, and gait, and, occasionally, poor motor coordination; and f) circumscribed special interest s, but with good rote memory. Wing (1981) added to these criteria, based on her own research, and felt that language was developmentally normal in only half of the clients. Contrary to AspergerÂ’s opinion that this disorder was rarely recognized before the ag e of three, Wing felt that the child may be perceived as odd, with deficits in joint attention, even as a toddler. She also observed that these children did not engage in creative, pretend play. She implied that the only difference in KannerÂ’s disorder and Aspe rgerÂ’s observations wa s in the degree of severity. Within the research and clinical envi ronments, interest in AS began to increase after Wing emphasized the relevance of AS to adult psychiatry (Jordan, 1999). For the rest of the 1980Â’s, there was disc ussion among scientists about the need to differentiate AS from other ASD, especially high functioning autism (HFA), as there was a difference in opinions as to whether this differentiation would aid in the resolution of diagnosis and manifestations related to autism in general (Grossman et al., 2000). However, by the end of the decade, WingÂ’s crite ria for the diagnosis of AS were followed closely by clinicians and researchers, with most of the research still conducted in the United Kingdom (Jordan, 1999). In 1986, Kerbeshian and Burd defined AS by five categories of diagnostic criteria that coordinated with WingÂ’s criteria, with the exception of resistance to change, which they combined with circumscribed intere sts. Tantham (1988a; 1988b) published his study

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4 of adults with AS, reinforcing Kerbeshian a nd BurdÂ’s concepts and criteria. However, in 1989, Gillberg revealed his diagnostic criteria for AS, and added an additional category, that of a life long circumscribed interest th at encompasses the indi vidualÂ’s life. In 1991, when Frith included a translation of AspergerÂ’s paper in her book, Autism and Asperger Syndrome, it became apparent that the characteris tics of those individuals described by Asperger demonstrated at least six crit eria for autism (Miller & Ozonoff, 1997). Diagnostic criteria . Diagnostic criteria for AS app eared initially in 1993, in the International Classific ation of Diseases, 10th edition ([ICD-10]; World Health Organization [WHO]), and then again in 1994 in the Diagnostic and Statistical Manual of Mental Health, 4th edition ([DSM-IV]; American Ps ychiatric Association [APA]). The current criteria includes (a) a disturbance that causes sign ificant impairment in social and occupational areas, as well as in other importa nt areas of development; (b) no significant general delay in language development, whic h is defined additiona lly as single use of words by two years of age, and the use of communicative phrases by three years of age; and (c) no significant delay in cognitive development or in the development of ageappropriate self-help skills, adaptive behaviors (other than social interaction), and childhood curiosity about the environment. The individual must also meet two of the criteria within the category of qualitative impairment in social interaction. These include marked impairment in the use of multiple nonverbal behaviors, failure to develop peer relationships that are developmentally appropriate, failure to seek comfort and aff ection from personal and intimate contacts, a lack of spontaneous social or emotion inter action with others, and a lack of social or emotional reciprocity. Additionally, the individual must manifest at least one criterion

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5 within the grouping of restri ctive repetitive and stereoty ped patterns of behavior, interests, and activities. Included in this category are a) an abnormally intensive preoccupation with one or more stereotypica l, restricted patterns of interest; b) stereotypical, repetitive motor movements; c) inflexibility with rituals and routines; and d) persistent preoccupation w ith parts of an object. The possible presence of delayed motor milestones or motor clumsiness is mentioned, but the absence of these characteristics does not prevent th e diagnosis of AS (APA, 1994). Epidemiology. There continues to be uncerta inty about whether the actual incidence of autism is increasing, or if ther e are additional factors that need to be considered. According to Fombonne (2003), “t he upward trend in ra tes of prevalence cannot be directly attributed to an increase in the inciden ce of the disorder” (p. 376). The increase in cases reported may be due to better recording arrange ments, the increased recognition of those individuals with HFA and AS, the increa sed number of professionals trained to recognize the disord er, or a combination of thes e factors (Jordan, 1999; Klin & Volkmar, 2000; Rutter, 2005; Ta ylor et al., 1999; Wing, 2005). The rate of occurrence is also of question, as the literature differs considerably. The most recent estimate is that AS occurs with a prevalence of 2.5 per 10,000 births (Fombonne, 2003). Again, however, this estimate is greatly dependent on “definitional research” (Klin & Volkmar, 2000, p. 62), and is but a guess. The vast range of discretion when diagnosing the disorder can inflate the num bers when other disord ers have yet to be discarded. Although most caregivers rec ognized that something was wrong by age eighteen months, obtaining the diagnosis of autism is sometimes not accomplished for two to three years after sy mptoms first appeared (Fombonne, 2003). For those children

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6 with AS, the delay until correct diagnosis may be even longer, since the social symptoms may not be apparent until late childhood or ear ly adolescence. Up until that time, more effort is usually spent diagnosing the co-morbidities that often accompany AS. This is especially true for those psychiatric sympto ms, such as obsessive-compulsive disorder (OCD), that interfere with activities of daily living (Jones, 2000). The role of genetic factors has been correlated with the incidence of autism, HFA, and AS (Ghaziuddin, 2005; Gillberg & Cederl und, 2005; Hallmayer et al., 2002). When the families of individuals with ASD and ot her PDD were investigated, researchers found that similar (but milder) symptoms of so cial difficulties (Ghaziuddin, 2005; Gillberg & Cederlund, 2005; Volkmar, Klin, & Pauls, 1998) and language impairment (Landa, Piven, Wzorek, Gayle, Chase, & Folstein, 1992 ) existed in many of the first and seconddegree relatives. When these symptoms were examined more closely, the researchers concluded that this clustering of related symptoms in families was a variation of many of the autistic symptoms, with varying degrees of affliction, and did not represent any specific diagnosis (Tuff, Szatmari, J ones, Bryson, Mahoney, & Bartolucci, 1999). Although past studies suggested that the process of twinning was itself a risk factor for the development of autism (Cohen et al., 2005; Betancur, Leboyer, & Gillberg, 2002; Greenberg, Hodge, Sowinski, & Nicoll, 2002) , population-based studies found only a slight to moderate increase in the rate of autism in twins (C roen, Grether, & Selvin, 2002; Hallmayer et al., 2002; Ho, Todd, & Constan tino, 2005; Hultman, Sparen, & Cnattingius, 2002). Researchers suggested that the proportion of affected twin pairs was dependent on “population based parameters, in cluding twinning rates, fam ily size, sibling recurrence

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7 rate, and concordance rates…and a realisti c number…could only be achieved through systematic ascertainment” (Hallmayer et al., 2002, p. 945). The difference in rates among genders has puzzled researchers for some time. While the ratio of male to female is almost identical for those individuals with severe mentally retarded forms of autism, it was thought that in HFA and AS, males outnumbered females by large numbers, sometimes as much as ten males to one female. While it is true that AS appears to be more pr ominent in males, the best guess at this time is that the ratio is clos er to 4.3:1 (Fombonne, 2003). Comorbidities. Asperger’s syndrome rarely presents in the purest of forms. It is often difficult to distinguish between a primary symptom and a symptom of comorbidity. There have been problems over th e years with the proposing of different diagnostic concepts, many of which have similar complex presentations, such as semantic-pragmatic disorder (Bishop, 1989; Lister-Brooks & Bowler, 1992; Rapin, 1996; Rapin & Allen, 1983), right-hemisphere dysf unction syndrome (Deb, Ellis, Ellis, & Fraser, 1994; McKelvey, Lambert, Mottron, & Sh evell, 1995), schizo id personality of childhood (Baltaxe & Simmons, 1992; Tant ham, 1988b; Wolff, 1995; 1998), nonverbal learning disorders (Harnadek & Rourke, 1994), and HFA (Frith, 1991; Szatmari, 1998). Jones (2000) raises the issue that ASD may be the “final common pathway of several…different pathologies…. describing di fferent pathological processes that may merely have common symptoms” (p. 34). Specific Social Impairments of AS Asperger’s syndrome is a disorder of social skill impairment, “a serious and neurodevelopmental disorder which is pr esently defined by so cial deficits …and restricted interests … and…rel ative preservation of langua ge and cognitive abilities”

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8 (Klin & Volkmar, 2000, p. 25). One of the most perplexing features of individuals with AS is their inability to u nderstand the concept of friends hip. Although the individual with AS may attempt to make contact with othe rs, the interaction may be one sided or inappropriate, with the nature of the contact not reflective of the quality of verbal and nonverbal responses that may have come from the other person. The adolescent with AS may not be able to understand the implied innuendos within a conversation and may misinterpret social cues (Klin & Volkmar, 2000; Simpson & Myles, 1998; Wing, 2005). Adolescents with AS either lack the nece ssary skills to interact effectively, or have the skills, but do not know how to uti lize them appropriately (Bellini, 2002). They tend to be extremely literal in their interpre tation of verbal convers ation, and may not be able to understand non-verbal gestures, or imp lied suggestions such as irony or sarcasm. They also have deficits in recognizing emotional states, and may have difficulty interpreting the meaning of facial expressions in othe rs (Kikuchi & Koga, 2003). Most of the individuals diagnosed with AS have an unusual, intense, and restricted area of interest. The child with AS may demonstrate the memorization of a large quantity of facts and detailed informa tion about one specific topic, which may be initially explained as an intense hobby. This topic of restricted interest may be age appropriate when the child is first diagnose d, but they continue to perseverate on that specific topic for an unexplainable and ina ppropriately lengthy duration, which may be years. As they grow older, their peers may consider this topic insignificant, but the individual with AS will continue to discuss th is topic without regard to othersÂ’ interests (Landa, 2000).

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9 Adolescents with AS may also demonstrate little conceptual u nderstanding of the art of social conversation. Instead of telling a story or having a goal directed conversation, the individual with AS may ha ve a one way conversation, which tends to be a monologue of reciting a series of detailed facts (Landa, 2000). Th e individual with AS will often dominate the convers ation until told that the topi c may no longer be discussed; even after being told to not discuss the topi c any further, the adol escent with AS will usually be unable to stop the perseveration. The inability to recipr ocate socially often leads to a traumatized self-image a nd social rejection (Frith, 1991). The consequences of rejection can take many forms, including aberrant and inappropriate behaviors such as exagge rated emotional responses, odd and unusual behaviors such as stereotypy, or regressive be haviors such as socially immature reactions. The adolescent may decide to withdraw, spending more time alone, compiling problems with restricted interests and perseveration (Hwang & H ughes, 2000). These changes in behaviors may become more noticeable as th e child approaches mid-adolescence, when socially appropriate behaviors are required fo r acceptance by their peer s. Because of this, adolescents with AS may develop depression, self-neglect, self-abus e, drug and alcohol abuse, or suicidal ideatio ns (Ghazuiddin, Ghazuiddin, & Greden, 2002; Ghazuiddin, King, Naylor, & Ghazuiddin, 2000; Hardan & Sahl, 1999). For other adolescents with AS, a pattern of absorption in solitary activ ities and hobbies can occur, which is often difficult to change or eliminate (Bellini, 2002). Significance of the Study Adolescence is a difficult period of tran sition for most children, but for those children with AS, this period can be extremel y traumatic. Societal mores dictate that the expected outcome of this transition is that the individual will become a functional part of

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10 society, but deficits in social competence of ten prevent those adolescents with AS from securing the relationships that precipitate lasting friendshi ps, loving relati onships with significant others, or profitabl e employment. These deficits in social functioning and social interaction are central features of AS, and are well do cumented in the literature (Klin, Volkmar, & Sparrow 2000; Wing, 2005). It is among their peers that adolescents are likely to fi nd their spouses, friends, and work colleagues; learning to interact socially with these groups is essential for living successfully as an adult. Peer activitie s provide a forum for developing socially acceptable behaviors and socia lly gratifying relationships. The arena of the close-knit peer group provides an opportunity for indi viduals to “find them selves”, therefore developing their own sense of identity. It is in comparison with othe rs of similar age and background that adolescents gain a sense of their individual qual ities (Head, 2002). For adolescents with AS, being accepted as part of that group is not easy, as their odd and eccentric behaviors often make them conspi cuously different, and contribute to being shunned by their peers. Once excluded from the social environments of their peer groups, even the hardiest of adolescents with AS will begin to avoid mo st social opportunities, thus eliminating many social situations in which th ey could learn appropriate social behaviors and practice newly acquired social skills. Howe ver, adolescents with AS want to be involved in successful personal relationships, interact verbally and non-verbally with others, and reciprocate appropr iately. Motivation to make friends is not the problem. Individuals with AS usually r ealize that they are not like th eir peers; although they may have the ability to recognize this differen ce, it is often more difficult for them to

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11 understand why they are different and what spec ific behaviors are in appropriate. They are highly receptive to any intervention that ma y give them the framework for enjoyable social interactions (Head, 2002). Teaching adolescents with AS to respond and interact appropriately with their peers is a priority for their social health. Becau se the most apparent social deficits of an individual with AS include difficulties with social relationships (Jones, 2000; Klin & Volkmar, 2000; Szatmari, Bryson, Streiner , Wilson, Archer, & Ryerse, 2000), the attainment of personally signifi cant social relationships becomes the goal of treatment. It is not only imperative to determine the specifi c social behaviors that are lacking, but to determine exactly which intervention will be the most beneficial for that individual. It is imperative that an intervention not only be effective for the short-term resolution of social behavior deficits, but also generalizes into other social situations and maintains over time. Only by assessing effectiveness over participants, settings, and behaviors will an intervention become accepted as appropriate. An intervention must be accessible for the student adolescent with AS during the school day with minimal disruption. An adde d bonus would be if the adolescent could use the intervention independently and unobtrusively. Unfortunately, when an intervention that meets the specific needs of the adolescent with AS is not available, many of these students leave the public sc hool system for private schooling or home schooling, therefore limiting th eir access to social inst ruction through observing and modeling the socially acceptabl e behaviors of their peers. The intervention must also be understood and accessible to those who provide the care and support within the home. Caregivers of adolescents with AS are often the ones

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12 who pick up the pieces of the adolescent’s shattered self-esteem, and deal with the aftermath of rejection. Caregivers, especially parents, know that their children have many wonderful qualities that are overs hadowed by their lack of social abilities. The caregivers realize that the nature of th e disability, specifically the la ck of social aptitude, often precludes the child from establishing meaningf ul social relationships . This frustration is amplified when caregivers see their child fail miserably at socializing, especially when the child wants to make friends so desper ately. Most caregivers want to help their children and need an intervention that is porta ble, can be situation specific, and can be easily developed and indivi dualized for their child. In addition, adolescents with AS are “v ery literal, and tend not to comprehend aspects of social interacti on that vary in meaning depe nding upon content,….are rule oriented, ….learn by rote basic social rule s…but tend to apply the rules inflexibly…” (Siegel, 1996, p.113). For this r eason, individuals with AS n eed direct instruction of social interaction skills, as they may not in ternalize the subtle in structions of methods used to teach non-autistic individuals (Bau minger, 2002). Many other interventions have been used to teach social skills to those indi viduals with autism. Of these, the use of SS has been a promising visual intervention that can be used to modify situation-specific behaviors and improve social skills. Social stories (Gray, 1998; Gray & Garand, 1993) have been used in studies with individuals with autism with promising results. However, there are only 24 studies to date that use SS as their intervention, and only two studies that include pa rticipant’s with AS. One of these studies deals with mealtime manners (Bledsoe, Myles, & Simpson, 2003), and the other addresses inappropriate behavior s that are making the participant late for

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13 class (Rogers & Myles, 2001). This leaves a significant gap in the literature. Unfortunately, much more resear ch and replication of studies is needed before SS can be accepted as beneficial and effective for the ac quisition of social skills in the individual with AS. This study of the effects of individualized SS on specific targeted social behaviors in adolescents with AS will add to that slowly growing body of knowledge regarding appropriate and effective interventions that address the social be havior deficits of adolescents with AS. Once these interventions are identified, adolescents with AS can begin to develop those social behaviors that, with hard work, enhan ce social integration. Purpose of the Study Many interventions are being currently assessed for their effectiveness on social impairments in younger children with moderate autism, but few studies focus on what interventions would be beneficial for indivi duals with AS. Even fewer are focused on the specific interventions for adolescents with AS. These gaps in the literature need to be addressed so social impairment interventi on programs can be individualized for those adolescents with AS. Therefore, the purpose of this study is to assess the effectiveness of SS for improving socially acceptable behaviors in adolescents with AS, using a single subject, multiple baseline desi gn, replicated over participants. Theoretical Framework For the nursing community, the social hea lth of individuals is dependent on progression through the normal growth and deve lopmental stages, so the individual can mature and become socially competent. Thos e individuals with AS who fail to establish social relationships that s upport and sustain them find that they cannot cope in normal society, and have increased rates of une mployment, mental health problems,

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14 dysfunctional family issues, and decreased rates of coping skills (Wing, 2005). Health care providers are responsible for gaining knowledge of eviden ce-based practices, so they can offer individualized, preventive interv entions to their patients. By promoting preventive measures and effective interven tions that will help to eliminate possible barriers to impaired social health, nurses become participants of multi-interventional teams who help individuals with AS attain proficiency in social skills that are required to become productive in society. These interven tions should be intr oduced and evaluated within the framework of a nursing theory. Theories are the formulations that organize or interpret facts, and are important to the effective professional prac tice of nursing. Nursing theori es provide the researcher with a framework in which to relate the sc ience of nursing to the practice of nursing. The clinical practice of nursing requi res the scientific development of theories on the part of the discipline. “The discipline, which is the body of knowledge, must not be confused with its associated practice realm, which embodies the processes of conducting research, giving service, and educating” (Nicoll, 1992, p. 213). In othe r words, the discipline of nursing drives the art of nursi ng science. According to Nico ll, the goal of nursing science is to foster self-caring beha vior that leads to individual health and well-being. Inquiry into the characterization of health is the f unction of nursing science. However, nursing is not an independent practice. The quality of theories, the formulation of research designs, and validity of conclusions are all dr awn from many other disciplines. Nursing has to be committed to the attain ment and maintenance of health. Nursing theorists address health within the explan ation of their theories, and define them according to their specific knowledge base. Im ogene King (1981) defined health as “the

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15 way individuals deal with the stresses of growth and development while functioning within the cultural pattern in which they were born and to which they attempt to conform” (p. 4). Health is important to all individuals, but sometimes factors arise that interfere with their activities of daily liv ing and maintenance of independence. For adolescents with AS, social impairments interf ere with their ability to maintain personal, social, and work relationships, and contribute to failure in ma intaining social health. In 1981, King wrote, “through perceptions of the environment and through verbal and nonverbal communication, individuals engage in multiple interactions with family members and friends” (p. 1). For adolescents wi th AS, the inability to develop verbal and nonverbal communication skills is the most disabling characteristic (Klin & Volkmar, 2000). According to King (1981), one of respons ibilities of nursing is the “objective assessment of functional abi lities and disabilities of i ndividuals and groups and the purposeful planning of goal dir ected activities…” (p. 8). Nurs es then become responsible for the discovery of interventions to assist in the social health of th e individual. Not only is it nursing’s responsibility to assess and plan the inte rventions that promote the attainment of health goals, but to implement and evaluate them as well. The Theory of Goal Attainment, presented in 1981 by King, was developed from her conceptual framework of nursing first proposed in 1971. In her initial framework, she detailed the concept that hu man beings were open systems that interacted with the environment. The individual is a personal system, while small and large groups are interpersonal systems. If the interpersonal systems have common interests and goals, they are called social systems.

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16 Communication is a process of these system s and is defined by King (1981) as the interchange of thought and opinions among individuals, and is influenced by the interrelationships of the systems and the indivi dual’s goals, needs, a nd expectations. It is the means by which “social interaction and lear ning take place” (p. 62). Direct contact is satisfied by verbal communication, while “ nonverbal communication includes gestures, facial expressions, actions, and posture s of listening and feeling” (p.62). In open systems, there is continuous and dynamic communication that forms the basis for transactions. According to Ki ng (1981), transactions depend on perception, which is a central concept for the developm ent of reality and form the basis of goaloriented actions. Transactions are coop erative, reciprocal, and goal oriented. “Transactions as processes of goal attainment in specific s ituations offer a dynamic area for the systemic study of role expecta tions and role performance…” (p. 83). King’s Theory of Goal Attainment (1981) will guide the investigative process for this study. This theory “provides the ba sic knowledge of nursing as a process of interactions that leads to transactions in nursing situations” (p. 177). By identifying the skill needed to facilitate in terpersonal communication, an in tervention can be evaluated within this framework. Adolescents with AS will need this intervention to improve their social skills and increase thei r chances of attaining stable social health. Those goals of health attainment are the measures by which the effectiveness of an intervention can be evaluated within th e nursing process.

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17 CHAPTER 2 REVIEW OF THE LITERATURE Since the primary characteristics of Aspe rgerÂ’s syndrome (AS) involve qualitative and quantitative impairment of social interactions, this chapter is dedicated to reviewing the literature. Initiall y, the history of autism and the development of separate diagnostic criteria for AS will be reviewed. Those interventions used for the development of socialization skills will then be briefly desc ribed. Finally, those rese arch studies related specifically to social stories (SS) will be critically examined and analyzed. Historical Overview: From Autism to AspergerÂ’s Syndrome Autism Although the diagnosis of autism did not exist until Leo Kanner published his renowned paper in 1943 (Frith, 1991 ), it is apparent, from revi ewing past literature, that there have always been individuals with au tistic characteristics (Ssucharewa & Wolff, 1996). Numerous characters in fiction and legends, from Sir Arthur Conan DoyleÂ’s Sherlock Holmes to Charles DickensÂ’s Ba rnaby Rudge, are portrayed frequently as having behavioral traits that may be inte rpreted as autistic (Frith, 1989; Grove, 1988). Soon after Kanner (1943) introduced early infantile autism (as he labeled his disorder), researchers began to describe situations in which the participants demonstrated autistic tendencies (Mahler, 1952; Robi nson & Vitale, 1954). Since th at time, there have been multiple studies that have attempted to define autism along a continuum of these behavioral traits. This diversity of symptoms , with such a broad range of interpretation, has caused confusion and difficulty for clinic ians when diagnosing those children with a

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18 myriad of symptoms; diagnoses were often based on psychiatric sy mptoms (Wing, 2005; Wolff, 1995; 2000). Initially, autism was seen as a specifi cally defined disorder diagnosed by the existence of a triad of symptoms including: (a) impaired, deviant, and extremely delayed social development; (b) impaired and devi ant language and communication (verbal and nonverbal); and (c) rigidity of thought and behavior, and imp overished social imagination with extreme delay or absence of ‘pre tend play’ (Wing & Gould, 1979). However, according to Wing (1998), other characteris tics were eventually defined, including “language delay and deviance, odd responses to sensory stimuli, clumsiness and peculiarities of posture and movement…di sorders of eating, dr inking, and sleeping…. and the possibility of superimposed psychiat ric illnesses…” (p. 22). She also began to describe the distribution of these symptoms as existing along a spectrum, and in the early 1980’s was the first to define this con tinuum as the Autistic Spectrum Disorders (ASD). Autistic Spectrum Disorders Classified as just one of several perv asive developmental disorders (PDD), ASD describes possible diagnostic categories along a vast spectrum for those children who do not exhibit sufficient criteria to be diagnosed as classically autisti c (Szatmari, 1998). It is through evaluation of differences in devel opmental progress that the variants are identified. At one end of the spectrum are “retarded… persons who do not produce meaningful verbal or nonverbal comm unication. At the other extreme are high functioning persons who are socially awkwar d, articulate, and ‘rela ted but odd,’ who may possess bright or even superior verbal and nonverbal intellect ” (Towbin, 1997, p. 362). Unfortunately, there has been an enorm ous amount of clinical variation and inconsistency in the institution of these cr iteria in the research setting (Frith, 1991;

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19 Rutter, 2005), leading to c ontinued controversy among many professionals regarding the classification and diagnostic criteria of ASD (Jones, 2000; Wing, 1996; 1998; 2000; 2005). Much of this controversy was dispel led with the inclusion of diagnostic evaluations, including the Au tism Diagnostic Observation Sc hedule – Generic (Lord et al., 2000), the Autism Diagnostic Interview – Revi sed (Lord, Rutter, & Le Couteur, 1994; Volkmar, 2005), and the Autism Spectrum Scr eening Questionnaire (Ehlers, Gillberg, & Wing, 1999) Diagnostic evaluations specific for AS include the Asperger Syndrome Diagnostic Interview (Gillberg, Gillberg, Rastam, &Wentz, 2001), the Asperger Syndrome Diagnostic Scale (Myles, Bock, & Simpson, 2001), the Gilliam Asperger’s Disorder Scale (Gilliam, 2001), the Krug As perger’s Disorder Index (Krug & Arick, 2003), and the Childhood Asperger’s Screen ing Test (Scott, Ba ron-Cohen, Bolton, & Brayne, 2002). However, there continues to be discourse among researchers on the reliability and validity of diagnostic tools for AS, with questions about sensitivity and specificity of results (C ampbell, 2005; Wing, 2005). Asperger’s Syndrome Although the diagnostic evaluation process wo rks well for those children who have a moderate to severe form of autism (usually with low to moderate levels of mental retardation), it is much more difficult to diagnose those individua ls who show atypical forms of the disorder. This narrower conti nuum of mild autistic symptoms and tendencies exists at one end of the autism spectrum. At the apex of this spectrum of PDD is AS, which is usually described as the highestfunctioning form of autism. Although AS now appears as a separate entity in the International Classification of Diseases, 10th edition ([ICD-10]; World Health Orga nization [WHO], 1993) and the Diagnostic and Statistical Manual of Mental Health, 4th edition ([DSM-IV]; Ameri can Psychiatric Association

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20 [APA], 1994), the debate whether AS should be a separate diagnostic category is ongoing (Wing, 2000). However, in the last few years, the number of studies that focuses entirely on individuals with AS have in creased significantly (Rogers, 2000). Overall, individuals with AS appear to ha ve less general impairment, higher verbal intelligence scores, and a better ability to ad apt to inclusive situations. In addition to different intellectual abilities, the major di fference between classic autism and AS is the quality of social interaction, involvement in activities, and types of interests. While some individuals with AS display many autistic-lik e characteristics, other individuals do not present with any overt symptoms at all, wi th the exception of profoundly impaired social interaction skills. Above all, that social impairment is often the most disabling of all the characteristics of AS, impairing effectiv e integration into society and the work environment, and relationships for compan ionship (Klin & Volk mar, 2000; Wing, 2000; 2005). Although there are many studies involving gene ral autism, there is relatively little published research about AS. While there are published studies before the publication of the ICD-10 (WHO, 1993) and DSM-IV (APA, 19 94) diagnostic criteria, most of them used the terms AS and HFA synonymously, and focused on task performance (Ehlers & Gillberg, 1998). Unfortunately, for several re asons, the number of studies published to date, that are specific to interventions that im prove the social behaviors of AS, is limited significantly in both quantity and scope, which, in turn, limits the depth of review. Interventions for Social Impairment Although there is no known cure, the trend for the treatment of the deficits seen in AS had been one of combined therapie s, including pharmacological treatments, educational strategies, and be havioral interventions (Gray, 1998). Family and individual

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21 psychotherapy, including counseling, had also been helpful in trea ting individuals with AS and was often an integral component of a more intensive behavioral treatment plan (Stoddart, 1999). In the last several decades, there have b een many different theoretical approaches to the instruction of social skills for those individuals di agnosed with ASD (for summary of these theoretical approaches, see Horner , Carr, Strain, Todd, & Reed, 2002; Pelios & Lund, 2001; Weiss, Harris, & Gill-Weiss, 2001). Several studies have enumerated these historical approaches, and analyzed empirica l studies that suppor t one intervention over another (Goldstein, 2002; Greenway, 2000; Hwang & Hughes, 2000; McConnell, 2002).Although varied, some of these approach es have had little em pirical evidence to support their continuous use and have needed fu rther investigation to provide validation and justification of their effectiveness. One of these approaches, still in need of evidencebased practice guidelines, includes learni ng strategies instruction, such as the Interpersonal Problem Solving Model (Bauminger, 2002) and an adaptation of Teaching your Child the Language of Social Success (Barnhill, Cook, & Tebbenkamp 2002). There have been many widely studied inte rventions that have been found to be effective, in varying degrees, on the acquisi tion of targeted social behaviors. Among these are peer modeling (Kamps et al., 2002; Morrison, Kamps, Garcia, & Parker, 2001), self-management techniques (Barry & Singe r, 2001; Mancina, Tankersley, Kamps, Kravitz, & Parrett, 2000; Mithaug & Mitha ug, 2003; Newman, Reinecke, & Meinberg, 2000), and video instruction (Charlop-C hristy & Daneshvar, 2003; DÂ’Ateno, Mangiapanello, & Taylor, 2003; LeBlanc et al., 2003; Nikopoulos & Keenen, 2003; Schreibman, Whalen, & Stahmer, 2000; Sherer et al., 2001; Shipley-Benamou, Lutzker,

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22 & Taubman, 2002; Wert & Neisworth, 2003). Games have also been invented or modified to help individuals with AS understand social concepts (Baker, 2000). The advancement of technology inevitably en courages the use of the computer to instruct individuals with AS. Not only is computer-assisted instruction used for academic instruction within the classroom, it is also being utilized to te ach socially acceptable behaviors (Bernard-Opitz, Sriram, & Naa khoda-Sapuan, 2001; Bishop, 2003; Cobb et al., 2002). One computer program is also used to teach recognition and prediction of emotions in others to individuals with ASD (Silver & Oakes, 2001). It is not surprising to find that those individuals that do not socialize effectively need multiple prompts to initiate or complete tasks. The use of prompts has been proven beneficial in the acquisition of many skills. For this reason, mo st interventions used with individuals with AS have used some form of a prompt as an intervention. The use of beepers as tactile prompts has been suggested as an alternative to the actual verbal and physical prompts that are utili zed in most classrooms and hom es, and have been shown to increase the studentÂ’s autono my and can cue the student wi th a minimal amount of fuss (Shabani et al., 2002; Taylor & Levin, 1998). It has been suggested that individuals with AS learn be tter with visual prompts (Quill, 1997). These prompts have taken the shape of a power card (Keeling, SmithMyles, Gagnon, & Simpson, 2003) or thought bubbles (Wellman et al, 2002). Research has also provided encouraging results for the use of social scripts in facilitating the social initiations of individuals with AS. Soci al scripts are pre-determined, loosely constructed, role specific dialogue taught thr ough modeling, prompting, and reinforcement. Social scripts are now successful ly combined with other methods of social

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23 skills instruction to promote conversationa l speech (Sarokoff, Taylor, & Paulson, 2001; Stevenson, Krantz, & McClannahan, 2000). Cue car ds have also been used to prompt individuals with AS to respond to questions , but have only demons trated effectiveness with students who read or have a preoccupa tion with words (Charlop-Christy & Kelson, 2003). Finally, one of the most promising visual support intervention s that has evolved recently is that of the SS (Del Valle, McE achern, & Chambers, 2001). Social stories have been used to teach specific tasks to indi viduals with ASD, including hand washing and on-task behaviors (Hagiwara & Myles, 1999), ap propriate play choices (Barry & Burlew, 2004; Delano, 2003), and increased social inte ractions (Feinberg, 2001; Pettigrew, 1998; Thiemann & Goldstein, 2001). There are also studi es that have investigated the use of SS in the prevention of dysfunctional behavior s in general settin gs (Agosta, Graetz, Mastropieri, & Scruggs, 2004; Graetz, 2003; Haggerty, Black, & Smith, 2005; Kuoch & Mirenda, 2003; Kuttler, Myles, & Carlson, 1998; Lorimer, Simpson, Myles, & Ganz, 2002; Romano, 2002; Scattone, Wilczynski, Edwa rds, & Rabian, 2002; Swaggert et al., 1995), while other studies investigated the use SS in the elimination of dysfunction behaviors associated with mealtimes (Ble dsoe, Myles, Simpson, 2003; Norris & Datillo, 1999; Rogers & Myles, 2001; Rowe, 1999; Staley, 2001). One study improvised the concept of the SS by setting it to music (Bro wnell, 2002). They have also been used to decrease anxiety (Cu llain, 2000), and introduce students to novel events (Ivey, Heflin, & Alberto, 2004).

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24 Social Stories Studies using a Case Study Design Gray and Garand (1993) introduced the idea of SS in their now classic study. They delineated the original characteristics of this intervention and descri bed the application of SS in four cases. The first was a 9-year old female who became upset when her brother was being picked up from school. She would “k ick the dashboard, become verbally upset over the route her mother took to the school, become upset seeing the principal touch the children…strike out at her brother, remove her seat belt, and pinch and scratch her mother…” (p. 6). These behaviors improved si gnificantly the first time a SS was used; the child required verbal cues when behavior s started to reappear, but her parents only had to re-read the SS occasionally. The second case involved a 6-year old, Max, who had two stories developed for him. The first was to help him adjust to the morning routine at school. He responded well from the very st art, although the teachers were concerned because he failed to remove his hat. They soon realized that removing his hat was not part of his SS; once it was added, he began to comply. His parents requested that a SS be written to help Max reduce his aggressive beha viors towards his sister’s cat. Once the SS for this problem was instituted, Max no longer displayed aggressive behaviors towards the cat. Gray and Garand (1993) also described how SS were used to reverse self-abusive behaviors in a 7-year old fe male, who had her SS read to her initially and then had it whispered to her. She then started reading th e SS to herself. Verbal cues were still needed, but she was directed to re-read her SS when her behaviors began to escalate. The authors concluded with a disc ussion of a high-school male w ho sang too loud in his choir. His SS directed him to sing just loud enough so he could hear the person beside him. He

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25 demonstrated positive results as long as he read his SS everyday; if he forgot to read it, he again reverted to singing loudly. Once he re started reading his SS, his singing volume decreased. Although Gray & Garand presen ted a thorough discussion of SS throughout their article, there were only brief explanations of the f our cases, whereas more data would have strengthened their claims. Rowe (1999) also describes the use of a SS with only one participant, but fails to give any real data in her wr ite-up of what seems to be an extremely brief case study. The participant is a second year pupil in a mainstream primary school, although the reader is confused as to what the exact age of the ch ild might be. This stude nt, diagnosed with AS, was distracted by visual stimuli and responded adversely to specific sounds; he refused to enter the lunchroom with his peers, and woul d scream and struggle if it was too noisy, or if his peers did not eat with their mouths closed. He was i nvolved in the writing of his SS, and read it every day for six weeks. There was an almost immediate response to the intervention, so fading was begun at six w eeks, and within 12 weeks the SS was no longer needed. Not only did the student respond well to the intervention, but he also was able to generalize it to assembly. Rogers and Myles (2001) used a variation of SS to help a 14-year old student with AS maintain behavioral contro l after lunch and during the tran sition to physical education (PE) class. TomÂ’s teachers noticed that his inappropriate behaviors escalated after lunch and continued into PE. He would make facial grimaces, exhibit hand flapping, and talk to himself. After lunch, he would go to his lock er and pace back and forth in front of it, requiring multiple prompts to gather his ma terials and go to PE. Because of these behaviors, Tom was late for PE frequently. Th e resource room teacher decide to count the

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26 number of verbal prompts required to make Tom adhere to his sche duled activates and to count the number of times he was tardy to PE. A SS was written that outlined what was happening at lunch and the steps that needed to be taken to get to PE on time. This SS was read to Tom before lunc h every day for five days. On the tenth day, the SS were revised to elaborate on some of the lunch activities and transitioning to PE. On the twelfth day, comic strip conversations were in troduced to illustrate the social problems Tom was having in the lunchroom. Because th ey were so effective in helping Tom understand some of the nuances of conversati ons in the lunchroom, he asked that the teacher make new comic strip conversations for other social situations he encountered at home and during the rest of the school da y. Overall, TomÂ’s social behavior improved considerably, as did his ability to become more organized and to get to PE on time. During the first five days, when the first SS was being read, Tom re quired an average of 13.75 verbal prompts to get to PE, but was not tardy at any time. After the second SS was introduced, Tom only required an average of 6.5 verbal prompt s to get to PE, and, again, he was not tardy to PE during that time. After the comic strip conversation was drawn, Tom only required 3.0 verbal prompts to get to PE on time. Studies using an A-B Design The first study published that used SS as an intervention was done by Swaggert et al. (1995). Using an A-B approach, they evaluated the use of SS for behavior modification for three children in a self-cont ained classroom at a large state university medical center. The first child demonstrated inappropriate and aggres sive behaviors, and the other two had trouble with sharing, parallel play, and aggressive behaviors. Once the SS intervention was introduced, these in appropriate behaviors were reduced. Unfortunately, as the researchers did admit, the study design was very loose, with no

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27 evaluation of treatment reliability or inter observer agreement (IOA). It is unclear how effective the use of SS actually was, sin ce other interventions, specifically verbal prompts, physical redirec tion, and a response-cost system, were also in use. Norris and Datillo (1999) also evaluated the effect of SS on one participant who demonstrated inappropriate behaviors at lunch, although this study was weakened with the use of an A-B design. Several indivi dualized SS were written, addressing her inappropriate social interactions, as well as describing several alternative behaviors that would be considered appropriate. These storie s were read to her in the hallway, just before going into the lunchroom. The research ers used interval recording to measure the frequency of appropriate a nd inappropriate behaviors, and the absence of social interactions. Although they reported that her inappropriate behaviors were reduced by 50%, the response was delayed, and the SS did not have any effect on increasing appropriate social behaviors. There were several reasons wh y the researchers thought this happened. They had written several SS, all of which had dealt with three different ideas, instead of focusing on just one behavior at a time. Failure to understand and internalize that many concepts at one time might have conf used the participant. The researchers also admit that, on more than one occasion, the re searcher was in the lunchroom attending to the video camera, and may have distracted the student. Th ey did not mention that the same researcher who had written and read the SS was also collecting and evaluating the data, and could have presented some bias in the interpretation of the data. In addition, as with Swaggert et al. (1995), treatment integr ity and social validity were not addressed. An A-B design was also used by Haggerty et al. (2005) to assess the effectiveness of a SS on externalized maladaptive behavi ors of Kirk, a 6 ½ -year old boy with a

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28 possible learning disability. Thes e behaviors appeared when Kirk became frustrated, and included kicking, screaming, head-banging, hi tting, biting, pinching, and foot-stomping. The behaviors were extremely disruptive and in terfered with Kirk’s ability to complete his schoolwork. Kirk’s SS was called his “calming book”, as it depicted replacement behaviors that Kirk could use when he felt frustrated. Kirk was encouraged to draw pictures of these replacement behaviors, and t hose pictures were incorporated into the SS itself. The SS was read by Kirk at school ever y day for four weeks, and read again to his mother in the evenings. After the SS had been in effect for two weeks, the teachers noted that Kirk appeared to be bored with the SS, so an apron storyboard was started to “boost Kirk’s efforts” (p. 43). The addition of th e apron storybook did seem to renew Kirk’s interest in the SS and allowed him another av enue to discuss replacement behaviors that could be used when he was feeling frustrate d. Kirk’s maladaptive behaviors did decrease in frequency by 60%, in durat ion by 79%, and in intensity by 82%. He also spent more time in the classroom, as visits to the offi ce and the counselor decreased, as did time he was spending in in-school suspension. Unfortuna tely, lack of experimental control limits the application of these results. Although social validity was discussed, treatment integrity and IOA was not. Generalization is also limited, in th at only one student participated in the study. Maintenance probe s would have also improved the validity of the study. Studies using a Reversal or Withdrawal Design Using an A-B-A-B design, Kuttler et al. (1998) evaluated the use of SS on pretantrum behavior in a 12-year male with autism, Fragile X syndrome, and intermittent explosive disorder. The child had difficu lty controlling himself with unexpected transitions, wait time, and free time. After trying classroom and individual picture

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29 activity schedules, reinforcements, sticker char ts, point charts, and token systems, one SS was written about working in the classroom in the morning and one was written about behaving at lunchtime. These SS were read just before the event, and he was allowed to carry the SS with him into the setting. Using an event recording system, the mean number of tantrums during the in itial baseline was 15.6 (range 10-19) during work and 11.6 (mean 4-20) at lunch. After the SS were in troduced, he displayed no further tantrums during work, and only averaged two during lu nch (range 0-5). Once the intervention was withdrawn, the mean number of tantrums increased to 15.3 (range 8-21) and 18 (range 14-20), respectively. In the sec ond intervention phase, the ta ntrums again decreased. He no longer displayed tantrum behaviors during work, and only averaged one during lunch (range 0-3). Unfortunately, no generalization pr obes were done; rep licating this design with at least one or two mo re participants would have also strengthened the study. Lorimer et al. (2002) also used a reversal design with event recording to evaluate the effectiveness of two SS on the tantrum beha viors of a 5-year old male with autism, OCD, and behavioral dysfunction. Multiple othe r interventions had failed to stop GreggÂ’s tantrums, which were occurring up to five tim es a day and lasting anywhere from 45 to 90 minutes. The SS were to address tantrum be haviors that occurred when adults were talking together, when an adult was talki ng to GreggÂ’s brother (Gregg would demand to have all of the attention), or when Gregg wa nted to engage in a nother activity that was not included in his therapy session; he also escalated any time he had to wait for any length of time. The SS was read every morni ng by his parents and by his therapists just before his therapy sessions. The tantrums d ecreased from 5-7 times a day during the first baseline period to none during the first in tervention phase. When the intervention was

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30 withdrawn, the tantrums agai n increased, but only on two of three days. Once the intervention was reintroduced, tantrum behavi ors were only exhibited once in one week. An additional benefit that was observed was th at Gregg appeared to take more of an interest in the interventions that were already in place before the SS interventions, including his mini-schedule and the clock. Th e researchers determined that this was because both were mentioned in the SS, a nd their use in his environment had become more consistent. As with the previous st udy (Kuttler et al., 1998) , there is concern because the behaviors returned to baseline when the intervention was withdrawn. Since the objective of the SS is to maintain and generalize, failure to obtain these results threaten external validity. Brownell (2002) approached th e intervention of SS in a unique way. He set the SS to music, and, using an AB-A-C/A-C-A-B design, he evaluated the use of SS on disruptive behaviors of four males, ages 6-9 ye ars, all of who were ve rbal and in first or second grade. Peter had pronounced echolalia. The SS was read to him in the first intervention phase and was sung to him in the second. There was an upward trend during the first baseline, which dropped dramatica lly during the first intervention phase. Although there was no mention of behaviors du ring the second baseline phase, the author did mention that there were fewer occurrences during the music phase than in the reading phase, and that although there was an upw ard trend in the last music phase, the frequencies did not approach those observ ed during the baseline period. Brian had difficulty following directions. The amount of time that passed before he would respond to an instruction was defined as the target behavior. He also demonstrated a dramatic reduction in behavioral occurrences during th e first intervention, but did not return to

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31 previous levels during the second baseline. The decline during the second intervention was not as pronounced, and there was no appa rent difference between the singing and reading intervention. Nathan had difficulty modulating the volume of his voice to match the environment. Verbal prompts to use a more appropriate voice were tallied. The frequencies of the verbal prompts decreas ed throughout the study, and were noticeably lower and more stable duri ng the singing condition when compared to the reading condition. Justin also had trouble keeping his vo ice at an acceptable level while inside. Verbal prompts were agai n tallied and evaluated. Although both intervention phases revealed a decrease in verbal prompts, there again did not seem to be any significant difference between the two conditions. Brownell (2002) suggests that instead of creating new lyrics for the SS, that it may be beneficial to “piggyback the lyrics” instead, which is when the SS sentences are put to the music of a song that is already familiar to the focus child. Brownell felt th at the data revealed that the use of SS was a contributing factor, but visu al analysis of the data reveals that the data was erratic and only one data point decreas ed to extinction. There was little stability within conditions and the second baseline was consistently lower, leading one to presume the responses were not treatment dependent. As with Kutter et al. (1998) and Lorimer et al. (2002), treatment integrity and social va lidity were not addressed, limiting internal validity. Bledsoe et al. (2003) used an A-B-A-B design to assess SS and their effect on the frequency of spills and napkin use during m ealtime of a 13-year old male with AS. Baseline data was collected for one week, af ter which the SS was written; it was then read before each lunch hour. During the firs t baseline, there were four spills and no

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32 napkin wipes. During the first intervention, which occurred over five days, the spills decreased to two, and the wipes increased to one. During the second baseline phase, spills again increased to three, and there were no wi pes with the napkin. Finally, in the second intervention, there was only one spill and one wipe with the na pkin. Although the number of spills decreased, the number of wipes with the napkin by the student did not show any real increase. The researchers determined that self-motivation and awareness of his lunchtime eating habits might have proven us eful in increasing the amount of times the student used his napkin, since he had started to notice that his peers were avoiding him because of his eating habits. Bledsoe et al. decided that using the SS for a longer period might be prudent. Kuoch and Mirenda (2003) challenged Gray and GarandÂ’s (1993) determination that SS would be more beneficial for st udents who were high functioning than for students who were lower functioning. Usi ng an A-B-A-B design, they examined the effectiveness of SS for three young boys with moderate autism. Andrew, who was 3 years, 10-months at the time of this study, wa s very aggressive and had a difficult time with sharing. His problem behaviors decrea sed when the SS was introduced, with less variability, and with the mean level lower than baseline. In contrast to previous studies (Kuttler et al., 1998; Lorimer et al., 2003), reve rsal of the effect of treatment did not occur when the intervention was withdrawn, and the rate of behavior remained low throughout the rest of the study. His mother reported that the changes had been maintained and had been generalized to the rest of the family. Henry, who was 5 years, 9 months, kept hi s hands in his pants and made sounds as if he was vomiting. When HenryÂ’s SS was introd uced, there was also a decrease in these

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33 behaviors, and the rate did not return to baseline once the intervention was withdrawn. Although HenryÂ’s behavior improved at school, it did not generalize to home. Neil, who was 6 years, 8-months old, cheated at game s, moved other playersÂ’ game pieces, and made negative comments about losing. As w ith the other two children, NeilÂ’s behaviors decreased with SS and did not return to baseline. Not only did NeilÂ’s behaviors generalize to home, but they also maintained at home. According to Kuoch and Mirenda (2003), the evaluation of SS should always be done using a multiple baseline to establish experimental control, as SS caused irreversible learning. Duration of appropriate play and verbal pr ompting were the dependent variables in the study by Barry and Burlew (2004). Using a reversal design, A-B-C-D, they assessed whether SS were effective for teaching choice making and play skills to children with autism. During the baseline phase, the two pa rticipants, Holly and Aaron, were assessed for graduated prompts and appropriate play. In the first intervention phase, two SS were written for choice making and appropriate play. These SS were read daily throughout phase B. The teacher then led instructional play, focusing on choices and appropriate play with materials in the classroom, which had ni ne play centers. Prompts and verbal praise were kept constant during this time, and the teacher and aide keep a count of the frequency and type of prompts, and the durati on of appropriate play. In phase C, another SS was introduced that described how to play with a peer, and included sharing materials, taking turns, and talking to a peer. The other SS also continue d to be read daily. In phase D, the SS were available to be read, but all teacher interventi on was discontinued and data collection continued. There was a cons tant downward trend for the number of prompts needed by Holly, as she went from three prompts per session at baseline to

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34 needing no prompts by phase D. Aaron went fr om needing four prompts at baseline to needing just one by phase D. Holly steadily increased her duration of appropriate play, and would spend time playing with another st udent. Aaron continued to make appropriate choices after being prompted, but would not play with the ot her children. After this study was completed, Holly moved into a regular cl assroom with paraprof essional support, and was able to generalize her new skills to her new classroom and to novel peers. Ivey et al. (2004) were the first to us e SS to prepare children for novel events. Three male children, 5to 7-years old, exhi bited extreme resistance in novel events. Behaviors such as tantrums, kicking, hitting, and echolalia were repo rted when there was difficulty with changes in routine situations. A SS was written to assist with the transition to their weekly therapy sessions with th eir speech-language pathologist (SLP). A reversal, A-B-A-B design was used to analyze participation in the novel event, with four types of novel events targeted: changes in setting, from the therapy room to the fish pond or the top of the parking ga rage; the presentation of a novel toy, all recently purchased and with multiple assembly steps, by an unfam iliar person; purchases at the gift shop or the convenience store located on the hospital grounds, and novel activities that occurred during the therapy session, such as making a vi deo or have a party. Five targeted skills were chosen for each novel event, with the child receiving points for completed skills. These skills, which included remaining on task, vocabulary words, and making a request specific to that setting, were a ddressed explicitly in the SS. The parents read the SS to their children daily for the five days prior to the therapy session with the SLP. Data was collected using event recording for 11 week s, and did reveal a 15-30% increase in participation by all three children to nove l events. However, remaining on task and

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35 requesting behaviors were not affected by the SS. The study is limited by the A-B-A-B design, which does not take into account that the intervention may not be reversible. There were also a predetermined number of se ssions, so baseline data did not reach levels of stability. This clouds the resu lts, since visual analysis may be skewed if no baseline is present. Agosta et al. (2004) used an A-B-C-A de sign to assess the effect of the SS on inappropriate vocalizations of a 6-year old male child with autism. Two different SS were written, one with a reinforcement written into the SS, and the second without the reinforcement. During the first baseline, th e frequency of the screams and the longest time interval between screams were calcula ted. During the first intervention, the SS was read three to four times just before the activity period; verbal praise and happy face stickers were given as positive reinforcers. During the second intervention phase, the happy face stickers were withdr awn, as was the SS with the reinforcement in the text. Only the second SS was read, and only ve rbal praise was given. During the second baseline period, no SS was read, and only verbal prompts to “r emain still and quiet” were used. Results revealed that there was a m ean of 21.2 screams (SD = 8.5) during the 20minute sessions, and a mean length between screams of 4.8 minut es. During the first intervention phase, the number of screams d ecreased to a mean of 7.4 *(SD = 4.7), and the length of time between screams increased to 9.5 minutes (SD = 4.7), with the longest period being 16.3 minutes. During the second in tervention phase, the number of screams during the 20-minute session was 6.8 (SD = 4.7) , and the length of time between screams a mean of 8.8 minutes (SD = 4.1), with th e longest period being 18.3 minutes. During the return to baseline, the number of screams s lightly increased to a mean of 9 (SD = 5.5),

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36 and the length of time between screams was 21.5 minutes. Overall, the number of screams decreased from the first to the second baseline, while the intervals of quiet sitting increased. Limitations include the partic ipation of only one subject, which limits generalization. Although treatment integrity and social validity were addressed, IOA was not assessed during this study. Data stabilization did not oc cur during the first baseline, since the teacher was anxious to get started after baseline data was collected for nine days. Studies using a Multip le Baseline Design Hagiwara and Myles (1999) were the first to use a multiple baseline across settings to evaluate the effectiveness of SS as a positive support intervention in a multimedia program for children with autism. The target behavior for two of the children, ages 7 years, 11 months and 9 years, 11 months, was handwashing, with settings before morning snack, before lunch, and after recess. Sc oring was based on in dependent responses, prompts, and physical assistance. The SS was developed using a computerized story in a book-like format. This program, known as Hypercard , contained “text of the SS, movies of the participants’ actions corresponding to SS sentences, audio capability that read sentences aloud, and a navigational button” (p. 84). Although both children had an increase in handwashing behavior s, the percentages at baseli ne were already very high (above 80% in most settings), so there was si gnificant overlap in th e data. However, the first child’s performance did reach 100% by the end of the study, w ith generalization and maintenance seen in the after-lunch setti ng. The second child’s performance only reached 93%, which meant he continued to need prompts in all settings. The target behavior for the third child, ag e 7 years, 3 months was on-task behavior, and the settings were at lunch, in the re source room, and in the general education

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37 classroom (Hagiwara & Myles, 1999). Initia lly, there was an increase in on-task behaviors seen during lunch, but after the initial increase, the behaviors returned to baseline. The response during resource room was inconsistent, and thought to be the result of self-stimulating behaviors. The in tervention was never introduced in the general education classroom because of a program cha nge in that classroom. The researchers felt that the study was limited by se veral factors, incl uding the restrictions caused by school schedules, the lack of persons available to collect data, the time it took to obtain authorization from the school and the parents, and the lack of consistency in the school settings. One of the most involved studies wa s done by Thiemann and Goldstein (2001), who used a multiple baseline across social skills to evaluate how specific social skills were affected when different vi sual cues were used in combination with SS. Five children with autism were grouped with two normally developed peers to form a triad, and participated in a 30-minute session twice w eekly. Targeted skills included (a) securing attention, (b) ini tiating comments, (c) initiating request s, and (d) contingent responses. The first 10-minute part of the sessions involve d instruction using one of four SS written to describe each targeted skill. The SS about the skill of the day was read by the child with autism, and then the examiner would as k comprehension questions. If the child with autism had difficulty answering any of the que stions, then the peers in the triad could help. Once the child with autism could answ er the comprehension questions with 80% accuracy, the dayÂ’s activities were introduced. A text cue card that had a drawing on it depicting the targeted skill was then introduce d. Cue words were attached to the text cue card; these were rehearsed by the child with autism by read ing them aloud, using them to

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38 role-play the target skill with the activity materials, and reading them again. Then the SS was placed on a flip chart and the text cue ca rds were placed on the table in the activity area. The second 10-minute part of the 30-mi nute treatment phase involved a social activity, during which the examiner stayed in the area but did not participate (Thiemann & Goldstein, 2001). If the targeted skill was not used by the child with autism at least once a minute, then the examiner would point to the text cue card, and if necessary, give a verbal prompt. If the examiner noticed th at she was giving many verbal prompts, then the peers in the triad were instructed to star t pointing to the text cu e card to prompt the child with autism themselves. The last part of the treatment session involved the viewing of a videotape of the activity session. The child ren were asked to evaluate the correct use of the targeted skill, and mark the results on a paper form supplied to them, which could be turned in for tickets to obtain small toys. Generalization probes were conducted for three of the five children with autism, but w ithout videotaping or SS instruction; the text cue card was read just before engaging in a 10minute activity with the same peers, but in the general classroom instead of the media room at the library. Once the intervention was introduced, all of the children with autism demonstrated increases in social behaviors compared to baseline, although maintenance and generalization probes were somewhat limited, with only one child with autism showing minor generalization of skills to hi s classroom. Some of the performances of previously improved skills returned to base line during maintenance, suggesting that a longer intervention period may be required, as 10-minute intervals may be too short to assess the effect of the intervention adequa tely. Since so many cues and prompts were

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39 involved, it becomes questionable as to whet her the SS had any greater effect on the attainment of social skills th an the other interventions. Evaluating the effectiveness of a SS on table manners was the focus of the dissertation of Staley (2001) . Using a reversal design em bedded in a multiple baseline across subjects design, Staley ev aluated five males, ages 12 years, 4 months to 14 years, 7 months, all of whom were in a self-c ontained special education class. One was diagnosed with ASD, one with PDD and seizures, and two with Trisomy 21. Target behaviors included wiping their mouth with a napkin and chewing with their mouth close. Staley used an A-B-C-D-C-D de sign, with a baselin e condition, a condition with just the SS, a condition with a SS and comprehension questions, and a condition with SS, comprehension questions, and a reinforcement. Results were not seen for any of the individuals until edible reinforcements were us ed, leading the researcher to conclude that the SS intervention alone was not responsible for measured outcomes. Scattone et al. (2002) used a multiple ba seline across particip ants to see if SS would be effective in decreasing disruptive be haviors for three stude nts with autism. The percentage of intervals of disruptive be haviors during a 20-minute observation period was assessed using a 10-second cu ed partial interval record ing. Targeted behavior for Kenny, a 7-year old, was tipping his chair back wards or sideways. The data for this behavior was collected at mid-morning, dur ing large group activity. At baseline, Kenny was tipping his chair an average of 60% of th e time; after the intervention of the SS, which he read every morning to his teacher, this rate decreased to an average of 4.6%. John, a 15-year old, would stare at the female students during recess, and demonstrate masturbatory behaviors. He was to read hi s SS to the teacherÂ’s aide one hour before

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40 recess; at times, he was highly resistant to th is process, and would pull his sweatshirt over his head. Because he was already receiving intervention for on-task behaviors, it was decided that these were escape behaviors and were skewing any data that may be obtained. However, his percentage of time engaged in dysfunctional behaviors during recess did decrease from 66.9% at baseline to an averag e of 18.35% after intervention. Howard, a 7-year old, shouted out during math class. Because he did not read, the SS was read to him every morning by the teacher’s ai de. Data was collected during math class, which was in the early afternoon. Disruptive beha viors decrease from 16% at baseline to 5.19% after his intervention. A lthough prompting was not planned, it continued to be done occasionally by the staff, and was mentioned as a limitation of the study. In her dissertation, Graetz (2003) used a multiple baseline across subjects with generalization and maintenance probes to exam ine the effectiveness of the use of SS for five adolescents with autism. The targeted behaviors for three of the students were reduced significantly, with this reduction ma intained during generalization probes. The fourth student always answered “What? What ?” or “No! No!”, when his teacher asked him a question. His behaviors averaged 18.6 tim es in a 20-minute period during baseline, but went up to 28 times in a 20-minute peri od during the interven tion phase. However, during generalization probes, his rate dropped to 11 times in a 20-minute period, and even further to six times in a 20-minute peri od during maintenance. The fifth student had a habit of hand wringing, but his behavior wa s too erratic during all of the phases for the intervention to be considered effective. Graetz felt that th e timing of the study may have skewed her results, since she started at th e beginning of school, and surmised that the

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41 students might have become more comfor table in the new environment, with a corresponding decrease in behaviors. Delano (2003) assessed the use of SS on the duration of appropriate social engagement and frequency of four specific social skills for three elementary school children. Using a multiple baseline across participants, Delano developed two separate probes: one for three students in elementa ry school and another for two boys in middle school. For both probes, the baseline phase c onsisted of interaction with a normally developing peer and the examiner, and e ngaging in 10-minutes of free play. Generalization probes were completed with a no vel peer in the intervention setting and in the regular classroom. Delano addressed six questions in her discussion. The first was whether SS increased the duration of appropria te social engagement. For the elementary school students, the answer was yes, although there were unstable tr ends and levels. The next question addressed th e duration of appropriate social engagement during generalization across people and settings. On ly two of the elementary school students generalized, but the middle school students di d not generalize at al l. The third question addressed whether the SS was effective in in creasing the frequency of social behaviors, with similar results. The fourth question was about the frequency of specific social behaviors during the pre-session phase, with th e elementary school students more apt to have increased socialization than the middle school student s. The fifth question asked how many readings of the SS it took before th e students made a novel response; all of the students made novel responses after reading th e SS only once or twice. Finally, the last question asked about the change in duration of inappropriate soci al engagements, and

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42 Delano reported that there were no episodes of inappropriate behaviors, so that question was moot. Delano (2003) was concerned about several issues and tr ends in her dissertation. She was concerned about social validity, and felt that if generalization could not be established, there was no reason to use SS as an intervention. She felt that withdrawing the intervention too quickly might have cont ributed to the failure to generalize, but questioned whether a specific procedure for fa ding could be identified that would apply to all multiple baseline designs. She was not sure how much of the information she obtained from the middle school students was re liable, as she claimed that students that age do not like to socialize around adults. Fina lly, she was concerned because several of the students were having thei r behavioral contracts modified at the time of the study; she thought this might have been too traumatic for the student , and may have skewed the results. Studies using Traditional, Group Comp arison, Quasi-Experimental Designs Although she completed her re search with children who had language impairments instead of autism, Pettigrew (1998) used an experimental design to evaluate the effectiveness of SS to improve social comp etence of 3and 4-year old children. She divided 69 children into three groups: an experimental group who used SS with scaffolding activities (n=31), a control gr oup who read a library book with no social meaning (n=24), and a comparison group who read a library book and participated in scaffolding activities (n=14). The experime ntal group read two SS over 20 sessions that lasted 20-minutes each. One of the SS was a bout asking a friend to play and the other about sharing. Pettigrew had the teachers comp lete preand post-test ratings of the studentsÂ’ behaviors, using the Social Competence and Be havior Evaluation Scale-

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43 Preschool Edition . She stated that the re sults revealed that the experimental group had an increase in social competence, but the st atistical results were confusing. There was disagreement between the data presented in the tables and graphs and the data she reported in the text. The number s she used for her Chi-square analysis were not the same as were presented elsewhere in the text. She al so extrapolated the sizes of the control and comparison groups in the Chi-square analys is, making the results suspect. The most puzzling aspect of this study was the question why she did no t measure behaviors instead of having the teachers measure ratings. By pr esenting actual data concerning changes in behaviors for all groups, this study could ha ve provided information that is more applicable. Cullain (2000) measured the impact of SS on excessive behavior al expressions and on the levels of anxiety of five elementa ry school children with autism. Targeted behaviors were individualized and based on results from the Functional Assessment Interview (FAI), and initial anxiety levels were established using the Revised ChildrenÂ’s Manifest Anxiety Scale (RCMAS). Cullain in itially had started with an A-B-A design, but three of her five participants moved during the study, and two students had to be dropped from the anxiety study because of high Lie Scale scores. Since she only had data on videotape for five days, she decided to co mpare the results of the intervention using a preand post-test evaluation of the numbers of excessive behaviors. The SS had been read to the students twice a day for the five days, targeting the behaviors identified by the FAI. Douglas was always following one partic ular student around in the room, and would not associate with any other children. Follo wing the intervention, hi s rate of behaviors decreased by 82.14%. His anxiety score decreased by 22.4%. SanderÂ’s excessive

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44 behaviors consisted of yelling and sulking wh ile playing games with his siblings; these decreased by 71.77% after his SS was read tw ice daily. His anxiet y score decreased by 29.8%. Although it was reported that KevinÂ’s verb al complaints and constant correcting of his peers during games improved with the us e of SS, the percentage of change was not reported in the text. However, it was repor ted that his anxiety score was reduced by 28.6%. The final student, Beth, had the most improvement in the reduction of her excessive behaviors, which consisted of throwing objects and touching and crowding her peers to get their attention. Af ter being exposed to her SS, these behaviors decreased to extinction. Unfortunately, Beth had been droppe d from the anxiety study because of her inaccurate scores on the RCMAS. Feinberg (2001) compare the effects of a SS, without any other type of intervention, on a control group of normally de veloped children (n=14) to the effect on a group of children with autism (n = 34). Target ed behaviors for both groups were greeting behaviors, requesting to play a game, asking another person what game they wanted to play, and accepting anotherÂ’s choice of game, and were evaluated by preand post-test evaluation. Feinberg also employed a correl ation design, and wanted to investigate whether social skill development could be predicted by verbal intelligence, receptive vocabulary, and/or severity of autism. The SS was read to the e xperimental group five times a day, while a regular story was read to the control group. She f ound that the results revealed there was a significant change, fo r the experimental group only, in greeting behaviors [F(5, 160) = 4.07, p = .002] and with asking another what they game they wanted to play [F(5, 160) = 7.54, p < .001]. Ho wever, there was no significance in asking another to play [F (5, 160) = 1.10, p < .37] or with accepting what another student wanted

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45 to play [F (5, 160) = 1.59, p = .17]. Linear regression revealed a high correlation between the severity of autism with the predic tion of total social skills score (R2 = .72, F (1, 32) = 83.84, p < .001). In her dissertation, Romano (2002) used an experimental design to assess the effectiveness of SS in modifying behaviors in children with autism. These targeted behaviors were aggression, echolalia, and soci al isolation. Ten child ren with autism were assigned to each group (experimental a nd control), matched on socialization, communication, and aggressive behaviors. Ba seline data was obtained for each group for five days, and revealed that aggressive beha viors did not exceed 38 aggressive acts per child during the observational period, that echolalia did not exceed 50 inappropriate verbalizations per child duri ng the observational period, a nd social isolation did not exceed 40 instances per child during the observational period. A SS for each target behavior was written for each child in the e xperimental group; the SS “were read to the treatment subjects (individually) a total of ten times per day, every 15-minutes beginning at 0900 and ending by 1130….The SS reader re mained with the child from 0900 to 1130 to collect data” (p. 29) . This interventi on was implemented for 30-days, giving each child ten trials. Follow-up data was colle cted for another five days, on both the experimental and control groups, six weeks after the intervention was discontinued. For the experimental group, results indicate that inappropriate communi cation, inappropriate socialization, and aggressive behaviors all de creased from pre-test to post-test, but that the behaviors increased from post-test to main tenance; however, these results remained at a level lower than the pre-te st. For the control group, re sults also indicated that inappropriate communication, in appropriate socialization, an d aggressive behaviors all

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46 decreased from pre-test to pos t-test. The researcher felt that this result was from contamination, as all the students were in th e same classroom and could overhear all of the interventions, even though they were not being read to directly. Like the experimental group, the control group experienced an in crease in behaviors from post-test to maintenance, but unlike the experimental gr oup, the results from pre-test to maintenance increased and exceeded pre-test scores. This indicted that, although very close, the experimental group did maintain for a longe r period of time and with less recidivism. Summary One of the newest interventions to be studied as an interv ention for individuals with ASD is that of the SS. Developed by Gray and Garang in 1993, SS are developmentally appropriate, and can be modified to meet th e individual’s needs and abilities. Social stories can be used to “model appropriate pla y, social interactions, and language; as well as prompt behavior and reinforce appropriate client responses (Thompson & Rudolph, as cited in Del Valle et al., 2001, p. 190). Since 1993, there have been only seventeen published studies on the use of SS, although seven unpublished dissertat ions are available from ProQuest Digital Dissertations that also utilized SS in research. Of these twenty-four studies, three studies were experimental (Feinberg, 2001; Pettig rew, 1998; Romano, 2002), three employed a case study approach (Gray & Garand, 1993; Rogers & Myles, 2001; Rowe, 1999), and eighteen used a SSED. Of these eighteen, fi ve used a multiple baseline (Delano, 2003; Graetz, 2003; Hagiwara & Myles, 1999; Th iemann & Goldstein, 2001; Scattone et al., 2002), while thirteen studies reported using a reversal design (Agosta et al., 2004; Barry & Burlew, 2004; Bledsoe et al., 2003; Brow nell, 2002; Cullain, 2000; Haggerty et al., 2005; Ivey et al., 2004; Kuoch & Mirenda, 2003; Kuttler et al., 1998; Lorimer et al.,

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47 2002; Norris & Datillo, 1999; Staley, 2001; Swa ggert et al., 1995). The majority of the studies involved elementary school children (A gosta et al., 2004; Barry & Burlew, 2004; Brownell, 2002; Cullain, 2000; Feinberg, 2001; Haggerty et al., 2005; Hagiwara & Myles, 1999; Ivey et al., 2004; Kuoch & Mire nda, 2003; Lorimer et al., 2002; Norris & Datillo, 1999; Pettigrew, 1998; Romano, 2002; S cattone et al., 2002; Swaggert et al., 1995; Thiemann & Goldstein, 2001), with only five studies addres sing intervention for adolescents alone (Bledsoe et al., 2003; Graetz, 2003; Ku ttler et al., 1998; Rogers & Myles, 2001; Staley, 2001). Two studies ha d subjects of varying ages (Delano, 2003, Gray & Garand, 1993), whereas Rowe (1999) did not reveal the age of her client, but only referred to him as “a year two pupil at a large mainstream primary school (p. 12), so one might surmise that he is an elementary school student. Results are also varied and should be in terpreted with caution . Although the results of the studies that utilized an A-B design were apparently positive (Norris & Datillo, 1999; Haggerty et al., 2005; Swaggert et al., 1995), those results are suspect because of the lack of experimental contro l, which increase threats to in ternal and external validity. For two of the studies using a reversal desi gn (Kutter et al., 1998; Lorimer et al., 2002), behaviors returned to baseline after the intervention was reve rsed, suggesting that the SS was not maintained. However, contrary to these findings, Kuoch a nd Mirenda (2003) also used a reversal design, but felt that the SS caused irreversible learning, and that only multiple baseline designs should be used to assess the effectiveness of SS. Limitations of the studies that used a multiple baseline design included the questions of the overuse of prompts (Scatt one et al., 2002; Thiemann & Goldstein, 2001), timing of the intervention (Graetz, 2 003; Hagiwara & Myles, 1999; Thiemann &

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48 Goldstein, 2001), lack of results without c ontingencies (Staley, 2001), schedule conflicts (Hagiwara & Myles, 1999), and lack of soci al validity (Delano, 2003). Those studies that used statistical analysis to assess effectiv eness of SS also were inconclusive, as data collection was affected by loss of subjects (Cullain, 2000), the methods used skewed the data results (Pettigrew, 1998; Romano, 2002), or the researcher attempted to use group statistics to measure indivi dual behaviors (Feinberg, 2001). Overall, there continues to be questio ns as to the effectiveness of SS on decreasing maladaptive behaviors, increas ing replacement behaviors that are more socially acceptable, or helping children transi tion to novel events. Ar eas of research that should be explored include the use of better experimental control, strict adherence to treatment integrity and social validation, mo re extensive probes for maintenance and generalization, and examination of the compon ents of the SS, including assessment of its effectiveness to a wider selection of particip ants and settings (Sansosti, Powell-Smith, & Kinkaid, 2004).

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49 CHAPTER 3 METHODOLOGY This study examined the use of a social st ory (SS) intervention on targeted social behaviors of adolescents with AspergerÂ’s Syndrome (AS). A single subject experimental design with a multiple baseline approach was used. The intervention was introduced to each participant after a stable baseline was established. This design was replicated for four participants, with each SS intervention i ndividualized to target the specific behaviors identified for each participant. This purpose of this chapter is to descri be the methodology that was used in this study. The purpose of the study is restated, a nd the rationale for the using SS as the intervention for this study is then clarifie d. The dependent variables are operationally defined, and the rationale for the use of the single subject and multiple baseline design is explained. Participant selection and inclusion and exclusion criteria are described, and the setting and the materials are outlined. Informa tion about the origins of SS and how they are written are then reviewed, and the expe rimental procedure and the method of data collection are delineated. The procedure by which inter-observer agreement (IOA), treatment integrity, and social validity were determined is summarized, and is then followed by an explanation of the method of data analysis. Rationale for the Use of SS The purpose of this study was to assess the effectiveness of SS for improving socially acceptable behaviors in adolescents with AS, using a single subject, multiple baseline design, replicated over participants. So cial stories are a visu al support that will

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50 hopefully increase the independe nce of the adolescent with AS. The adolescent will have direct access to social information, eliminati ng the difficulty they have when they try to assimilate social information th rough direct social interactio n with others. Because the SS is portable, it can stay with the adolescent during all types of situations, permitting access to the visual support at any time. Visual prompts are often used with soci al interventions. Prompts reinforce the effectiveness of interventions, and were therefore included in this study. Although the prompts were part of the independent variable , the types of prompts needed to reinforce the SS were also recorded and graphed. This data will be analyzed and discussed with respect to the effectiv eness of the SS as an independent intervention. Operational Definitions of Dependent Variables Target behaviors were identified by the PI after interviewing the participant and their parents. The target behaviors operat ionally defined for th is study included turntaking and interrupting. Turn-Taking Turn-taking was coded as occurring if the subject responded with appropriate speech within five seconds after the interviewer had asked a question or made a statement to which a response was expected. Examples may include, but were not limited to, an answer to a question asked by th e interviewer, or a phrase, or parts of a phrase, such as “yes”, “no”, “maybe” “What happened next?” , “How did that happened”, “What did you do then?”, “What did they say?”, “Tell me more about that”, “Why did that happen”, “What is that”, “What does that mean”, “W hat do you mean by that”, “Where did that happen”, “Who did that”, “How is that done”, and “How do you feel about that”, etc.

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51 Interrupting Any verbal interruption of more than one or two words during the time the interviewer was speaking was coded as an inte rruption; words that are utterances about the topic are excluded, including, but not limite d to, as “Really”, “Wow”, “No kidding”, “No way”, “Awesome” etc. Design Rationale for the Use of the Sing le Subject Experime ntal Design A single subject experimental design (SSED) was used for this study. The objective of a SSED is to establish the effects of an intervention on a single i ndividual. The essence of this design is that individual participants act as their own cont rols. The establishment of an initial baseline and the use of repeated measurements allow the process of change to be monitored closely (Barker, Pistrang, & Elliot, 2002; Freeman, 2003; Kazdin, 1982; Neuman & McCormick, 1995; Tawney & Gast, 1984). According to Elder (1997), there are six reasons why the SSED may be more appropriate for addressing nursing research questions than group designs. These include (a) the intent of the research question as it pe rtains to the behavior of the individual, (b) the individualization of group da ta, (c) the introduction of sta tistical errors of data from group designs when applied to the individual, (d) the difficulty in group assignments for individual who demonstrate signi ficant variability, (e) the inability to find representative sampling with these individua ls, and (f) the ethical cons iderations of withholding effective treatment from a control group. For this study, many of these concerns applied. The research question was based on a ch ange in social behavior, which was individualized and could not be measured by group statistics (Neuman & McCormick, 1995). The adolescent with AS can demonstrate a significant range of social deficits, and

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52 the research question in this study was specifi c to these deficits. The research question must also have social validity, which ma y only be applicable for that individual. Therefore, the analysis of behavior needs to be individualized, in order to assess for the changes significant to that individual, not the group (Kazdin, 1982). When assessing behavioral change, which by definition exists at the individualÂ’s level, the SSED is considered the best design (Sidman, 1960). Discovery at the group level may or may not apply to the individual. The goal of the group design is to define the average char acteristics and results of the group and not to define what may work for the individual (Kazdin, 1982). Unfortunate ly, statistical data from a group design might minimize the variat ion of symptoms seen with adolescents with AS. The adolescent with AS has such pr onounced, peculiar social deficits that, in most instances, the results of data collecti on, referring to the effects of an intervention, may be statistically significan t within the group, but may be considered inappropriate for the individual. This leads to misinformation at the clinical level. The application of group data may not be representational at the i ndividual level, and ma y be responsible for incorrect practice decisions by the medical provider since inte rventions that are ineffective or harmful to the individual may be recommended. Only by assessing the effect of the intervention on the individual and their specific deficits will it be known if the group data is applicab le to the individual. Along with attempts to apply group statistics to the individual is the introduction of statistical error with group designs. Examination of group da ta furnishes insight into variability in performance across a targeted group. Results may be outliers, much of which is discarded during group data analysis as a standard process, as outliers represent

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53 those behaviors that are not considered sta tistically significant. Because an adolescent with AS does not always fall within the av erages associated with group designs, their data have a strong possibility of being perceived as outliers; the data analysis of the group would not be representative of that individual with AS. The information gained from the study of outlying data may reveal valuable, sc ientifically signifi cant data (Elder, 1997). With a SSED, data analysis is personalize d, with internal validit y addressed through the assessment of treatment validity and IOA, a nd the lack of problems with differential selection. External validity is addressed by replication across partic ipants and behaviors (Neuman & McCormick, 1995). If using a group design with individuals with AS, it is extremely difficult to attain homogeneity in groups, since there is so mu ch variation in the behaviors of these individuals. The definition of AS infers that there are vast varieties of behaviors that can be representative of the disorder; infinite combinations may present clinically. The inability to maintain samples that have sim ilar characteristics will skew the results of a group analysis, with resultant pr oblems with internal validity. The inability to recruit adequate number s of participants who are representational can hinder the group design. Historically, dia gnosing adolescents with AS has been a challenge, since so many of these individuals have had to make adjustments to become socially accepted; they are seen as eccentric, instead of impa ired. Since diagnostic criteria of AS have only been in existence since 1994 (American Psychiatric Association [APA], 1994), many children evaluated before that time were misdiagnosed. Even today, many clinicians miss the diagnostic characteristics of the disorder, seeing these individuals as just socially withdrawn with behavioral problems, and so may continue to misdiagnose

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54 them (Szatmari, 1998). These diagnostic pr oblems significantly limit the numbers of individuals available for group designs. This provides another justification for using SSED to study interventions for adolescents with AS. Because behavior is dynamic, the patterns of behavior are constantly changing and vary at the individual’s level (K azdin, 1982; Neuman & McCormick, 1995). Representative sampling is difficult to achie ve. Group designs with their preand postintervention assessments do not allow the investig ator to assess the variation in behavior, and may skew results, depending on environmen tal factors on the day of testing. By definition, individuals with AS have extr emely varied behaviors, and have highly sensitivity to changes in environmental s timuli (APA, 1994; World Health Organization, 1993). Taking a “snapshot” picture does not de tail individual behavior, and will not give the investigator the comprehensive information that is needed to assess for the effectiveness of an intervention. Only by using the SSED will the investigator see changes in behavior over time. These repeated measurements allow for adjustments in the intervention, and gives the i nvestigator the ability to l ook at patterns of behavior (Neuman & McCormick, 1995). Lastly, the SSED allows the investigator to assess an intervention without worrying about the ethical considerat ion of denying an intervention to the control group, or withdrawing it from a participant once the e ffectiveness has been determined. Since the participants are their own control, each has the benefit of the intervention. Rationale for the Multiple Baseline Design Multiple baselines are used when there is any concern about withdrawing the intervention, which may occur when the respon se to the intervention is not reversible, when it is undesirable or unsafe to return be haviors to pre-interven tion levels, or when it

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55 would be unethical to reverse the interventi on. There are many variations of the multiple baseline design: across behavior s, across settings, across time, across situations, or across participants, just to name a few (Kazdin, 1982). The multiple baseline design involves the initial measurement of the frequency of th e target behaviors produced by each of the participants during baseline c onditions. Once a stable baseline is established for the first participant, the intervention is introduced to th at participant, while the other participants are continuously monitored under baseline c onditions. Once the target behaviors of the first participant stabilize in the interven tion phase, monitoring of that participant continues as a maintenance check and helps to determine if the effect of the intervention is durable over time (Tawney & Gast, 1984). Th e intervention is then introduced to the second participant. Baseline monitoring conti nues for those participants who are awaiting the intervention. This sequential introducti on of the interventi on continues until all participants have been introduced to the same intervention. For this study, a multiple baseline across participants was used. The multiple baseline design is considered appropriate fo r this study for severa l reasons. Multiple baseline designs do not depend on the withdrawal of treatmen t to demonstrate that the change in behavior is related directly to the inte rvention. This is important to consider that the participant may have learned the intervention sufficientl y, thus preventing the targeted behaviors from returning to baseli ne. In this study, the repetitiveness of the SS could have resulted in early, residual learning, so that the e ffectiveness of the intervention could not be supported or re futed by any other SSED. The multiple baseline design requires that the intervention be introduced for only one dependent variable at a time. This pr erequisite does have its advantages. The

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56 intervention is introduced gradually, and can only “increase the scope of the treatment after having mastered the initial applica tion” (Kazdin, 1982, p.150). If the intervention produces a weak response, or produces no chan ge in the dependent variable, then time and effort has not been wasted evaluating an ineffective intervention on multiple participants. For this study, the SS could have been rewritten or re vised if the initial response was not effectual. The multiple baseline design does have some limitations. The targeted behaviors, participants, or settings must not be interdependent, as th e “implementation of treatment for one behavior…leads to changes in ot her behaviors…even though these latter behaviors have not received treatment” (Kazdin, 1982, p. 151). This is prevented by choosing participants who “are functionally independent of one another (relative to the targeted behavior), so that baseline data will remain stable until the intervention is sequentially applied to each” (Tawney & Gast, 1984, p. 257). However, the subjects must be sufficiently similar so that there is an e xpectation that the interv ention will be effective for each participant. Another limitation is that the multiple baseline design is time-consuming, and requires that the PI monitor the target behavior s concurrently and continuously across each participant. This intensive and constant involvement may prove to be too much for some participants, and they may decide not to participate in a study or drop out once involved (Tawney & Gast, 1984). Finally, because individuals respond differently, attain ing stability may require prolonged baselines for those awaiting interv ention. This can be avoided by “utilizing short baseline phases or brief lags before applying treatmen t to the next baseline, and by

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57 implementing the intervention across two or more …persons…simultaneously in the design” (Kazdin, 1982, p. 151). Participant Selection A list of potential participants, all of wh om were between the ages of 11 and 16 years and identified as having si gnificant social impairments caused by the lack of social acceptable behaviors, were selected based on in clusion and exclusion cr iteria and referred to the Principal Investigat or (PI) by designates of the Directors of Exceptional and Special Education departments at the D uval County School Board and Baker County School Boards. Inclusion Criteria The participants were included in this study if their parents signed an informed consent for participation in the study and an informed consent to videotape the sessions (see Appendix A), and the part icipants met the following criteria: a) they had a medical diagnosis of AS, according to the Diagnostic and Statistical M anual of Mental Health, 4th edition (APA, 1994), as establis hed by a review of their me dical record or Individual Education Plan; b) they were willing to partic ipate in this study and to sign a form of assent (see Appendix A); c) th eir age was between 11 and 21 y ears of age; d) they were currently students, either in a formal school se tting or a home school se tting; e) they were able to read and comprehend at a third grade level, as measured by Woodcock-Johnson Test of Achievement, 3rd edition , as documented in their scho ol records, and/or in the neuropsychological evaluations, as established by a review of the medical records; and f) they had normal intelligence as measured by the Wechsler Intelligence Scale for Children, 4th edition , as documented in their scho ol records, and/or in their neuropsychological evaluations, as establishe d by a review of the medical records.

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58 Since the diagnosis of AS appears to be more prominent in males (Fombonne, 2003), it was anticipated that a significant number of participants would be male; however, three female participants meeting the criteria were also considered, but declined to participate. Since the incidence of co-morbidities is high in this population (Jones, 2000), it was expected that all participants would be on medications that are used to control these co-morbidities. Th ree of the participants were on various medications for Attention Deficit Hyperactivity Disorders (ADHD) or Atten tion Deficit Di sorder (ADD), one was on Zarontin for seizure management a nd Catapres for facial tics, and all were taking antidepressants. The pare nts adhered to the medical regimens and administered medications as ordered by the medical provi der. The medical and medication regimens remained stable for all partic ipants throughout the entire study. Exclusion Criteria The participants were excluded from this study if, a) they had any type of hearing or vision deficits, as measured by the routin e screenings completed by the school nurse in the home or at school, and documented in their school records; and b) they had more than three co-morbidities diagnosed by the medical providers, as established by a review of their medical records. All of the participants in this study had at le ast two co-morbidities, while one had three. All had inta ct hearing and visual senses. Discussion of Participants Seven participants initiall y agreed to participate in the study. All were male, between the ages of 11 and 15, and home-s chooled. One participant was dropped from the study within the first two weeks after bei ng unavailable for three sessions in a week. Another participant was dropped after four weeks because his mother decided to take him off his ADHD medication agains t medical advice, and his be havior was not conducive for

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59 the application of the intervention. The last participant was dropped during his maintenance phase after his mother was hospitalized. Participant 1 – “Adam”. Adam is a 14-year, 8 month old AfricanAmerican male adolescent who lives with both parents and a yo unger sister in a rural part of a southern state. His father is self-employed as a landscaper, and his mother is a full-time homemaker. His maternal grandparents live ne xt door and are actively involved in his life. He attended a private church school until the middle of his fifth-grade year. Unlike the other participants, Adam’s parents decide d to home school him because of his high intelligence. Over the last four years, Ad am has fulfilled all the requirements for highschool graduation and is contemplating early admission to a state university this fall where he will study computer science. He ha s been diagnosed with ADD and depression, but has been stable on medication for nine years and four years, respectively. Adam gets along well with his family, but only has one male acquaintance at his church with whom he occasionally associates. The other adolescents in his church family have made comments to his si ster about his ‘weirdness’, but usually ignore him. Because he left the private church school before he entered the middle school grades and has always been surrounded by people who are frie nds of the family, Adam has not had to endure the teasing and taunting by his peers th at is so common among adolescents with AS. According to his parents, Adam’s primar ily problem is one of interrupting while someone else is speaking, and exhibiting a mild tendency to perseverate about computers. He tends to annoy those around him with his constant finger drumming, which he does on any surface at any time. His parents have tr ied to teach him self-management techniques

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60 to remind himself to not interrupt and to keep his fingers “quiet”, but to no avail. They are anxious to see if a SS could change Adam’s behaviors. Participant 2 – “Ben”. Ben is a 12-year, 6-month old Caucasian male who lives with his parents, three older brothers, ages 13 and 14 years, and two younger sisters, ages 10 and 11 years, in a small town in a southern state. Ben has been treated for a seizure disorder since he was three years of age, but has been seizure free for the last two years. He has been treated for depression since th ird grade, and has di scussed coming off his medication with his pediatrician. His parent s have agreed to let him wean off this medication over the summer. He is also bei ng treated for facial tics, which are well controlled on nightly medication. Both of his older brothers have been diagnosed with ADHD, and his youngest sister was recently diagnosed with bipolar disorder. Both parents have been diagnosed with depressi on, and have been stable on medication for greater than five years. His father is a hi gh-school mathematics teacher who also helps coach the track team, and his mother is a li censed practical nurse at a local long-term nursing facility. Ben attended public school until last year, where he consistently made the All-A’s honor roll. His parents made the decision to re move him from this environment after he was beaten by some of his peers, requiring a minor surgical procedure and extensive dental reconstruction. He had been suffering se vere verbal and emotional abuse from his schoolmates for several years, but his parent s did not realize how extreme it had become until the abuse became physical. Currently, Ben is home schooled by his paternal aunt, who is currently pursuing a teaching assistan t certification at a lo cal trade school.

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61 According to his parents, Ben rarely pa rticipates actively in a conversation. He has a tendency to interrupt those who are speaking, does not demonstrate reciprocity when spoken to, and responds inappropriately when asked a question. They have tried both positive and negative reinforcement over the years, but now just tend to talk around him. This frustrates Ben and he tends to wit hdraw from family activi ties, preferring to sit in his room and draw pictures of horses. Ben is anxious for any help he can get to assist in increasing his social skills. Participants 3 and 4 – “Charlie” and “Danny”. Charlie and Danny are 13 year, 2-month old Caucasian males, who, along with th eir brother, are iden tical triplets. They live with their mother and older brother in a small rural town in a southern state. Their older brother is a typically developed 16-year old who now attends the local high school. The triplets, diagnosed with AS at the age of seven years, only associate with each other, and rarely go anywhere without each other. They used to participate in Little League and Pop Warner sports programs, but had multiple encounters over the last six years with other children in which they endured verbal and physical ab use, so they stopped being involved in all sports activities last year. . Charlie and Danny’s father owns a taxide rmy business with their uncle that has been very successful, and all of the brothers have helped in the shop since they were small children. Their father is also out of to wn several days a week on business as a sales representative. He was noted to have mild AS -like characteristics, and was hesitant about his children participating in the study. He took several days to ma ke up his mind, and did so only after questioning the PI extensively. He refused to allow his wife to complete any of the demographic information, and demanded th at all videotapes be returned to him at

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62 the end of the study. He read and approved the SS for each of his children before allowing the study to continue. During the first half of the study, he was present in the home for two of the three se ssions a week. However, during the second half of the study, he moved out of the family home a nd rarely communicated with the PI. The triplet’s mother has a degree in physical educati on, but has always been a homemaker. She also was diagnosed in early adulthood as having a paranoid personality disorder, for which she has taken medication for years without any serious complications. She has had long periods of stable mental health, with only two hospitalizations for medication management in the last 15 years, the last one about six years ago. Toward the end of the study, she was hospitalized again. The father then refused to allow his sons to continue to participate in the study, so Danny’s follow-up sessions to assess for maintenance at one month was not completed. Charlie is being treated for ADD, and Da nny is being treated for ADHD. Both are stable on their medication. They were diagnosed with depression last year, and have been stable on medication since that time. Since th ey have been on anti-d epressants, according to their father, their sleep patterns have returned to normal and they are no longer exhibiting high anxiety behaviors. Charlie and Danny have been home schooled since kindergarten because of their parents’ religious beliefs, but have always scored above the 85% in all state standardized tests. After observing Charlie and Danny and talk ing with their parents, it was noted that they both had difficulty with reciprocity a nd were constantly in terrupting each other. They verbalized a desire to “get our act toge ther”, as they were becoming more aware of their attraction to girls and were anxious to be involved with public school activities like

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63 their older brother. They rema ined motivated and enthusiastic about the study, in spite of long baseline phases. Setting The settings in which the videotaping occurred and the intervention was administered were quiet, isolated rooms in the homes of the participants. This facilitated uninterrupted interactions betw een the PI and the participant, and allowed videotaping in an unobtrusive manner. The rooms used in Adam and BenÂ’s homes were the formal dining rooms. The office was used in Charlie and DannyÂ’s home. The participant and the PI sat across a table or desk from each other, about two to three feet apart, which was a comfortable distance for conversation. An attempt was made to maintain the same environmental setting during the entire study, an d to tape the sessions during the same time of day. Training the senior undergraduate student to be the second observer took place in a quiet, isolated conference room at a local private university, which maximized uninterrupted interactions. Viewing the vide otapes and counting the targeted behaviors took place in either the PIÂ’s private home of fice or the PIÂ’s work office at a private university, with no interruptions allowed. The viewing of select ed portions of videotapes for IOA took place in the PIÂ’s work office. Materials Materials for Selection of Target Behaviors Initial data for gathering demographic in formation and for the identification of target behaviors were collected by the PI th rough direct observation of the participants, structured interviews with the participants and their parents, a nd information obtained from the Caregiver Questionnaire for Assessm ent of Social Behaviors ([CQASB]; see

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64 Appendix B), the Home and Community Soci al Behavior Scale ([HCSBS]; Merrell, Streeter, & Boelter, 2001), and the Child Behavior Checklist for ages 6-18 ([CBCL]; Achenbach, 1991). This descriptive informa tion is critical for determining the generalizability of findings to other adolescents with AS, for replicating the research, and for designing future interventions (see Table 3.1). In addition, they were used to help identify target behaviors for whic h a social story were written. Table 3-1. Correspondence between Instrume ntation and Sample Characteristics Measure Instrumentation Purpose CQASB Caregiver Report 1. Assess caregiverÂ’s perceptions of adolescentÂ’s social problems 2. Identify target behaviors for social story intervention HCSBS Caregiver Report 1. Provide demographic information about the adolescent 2. Provide integrated comprehensive ratings of both social skills and antisocial problem behaviors 3. Identify target behaviors for social story intervention CBCL for ages 6-18 Caregiver Report 1. Assess caregiverÂ’s perceptions of adolescentÂ’s behavior problems 2. Identify target behaviors for social story intervention The CQASB was used to assess problems with social behaviors prior to participation in the baseline sessions. This questionnaire, developed by the PI, has five short answer questions that al low the parents to identify specific social situations in which the adolescent has difficulty relating to others, and the speci fic social behaviors that are problematic.

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65 The HCSBS was used prior to participati on in the baseline sessions to provide demographic information about the adolescent , including name, age, gender, and grade in school, and to provide comprehensive ratings of both social skills and antisocial problem behaviors that they may exhibit. The HCSBS is designed to be completed by home-based raters and includes two co-normed scales . The Social Competence scale includes 32 items that measure adaptive, pr osocial skills on two subscales: Peer Relations , and SelfManagement/Compliance . The Antisocial Behavior scale includes 32 items that measure socially linked problem behaviors on two subscales: Defiant/Disruptive and AntisocialAggressive . The HCSBS was standardized with a national sample of ratings of 1,562 children and adolescents ages 5-18. Internal consistency reliability of the HCSBS is 0.96 to 0.97 for the two total scale scores, and 0.94 for the four subscales. Test-reliability of the HCSBS at 1-2 week intervals has been doc umented at 0.84 for the Social Competence scale and 0.91 for the Antisocial Behavior sc ale total scores. Interrater reliability coefficients from mother's and father's ra ting the same child have been documented at 0.86 for the Social Competence total score, and 0.71 for the Antisoc ial Behavior total score (Merrell. Streeter, & Boelter, 2001). The CBCL was used to assess the caregiverÂ’s perceptions of the childÂ’s behavior problems prior to participation in the baseli ne sessions. Identify ing problem behaviors may indicate situations in which the adolesce nt feels compelled to act out because of difficulty using appropriate so cial behaviors. The CBCL cons ists of 113-items associated with behavior problems. The items constitute multiple behavior-problem scales for two broad-band groupings in all sex and age groups: Externalizing Behavior and Internalizing Behavior. The Externalizing Scale was used to assess problem behavior. The CBCL has

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66 established norms. Intraclass co rrelations are 0.98 for interp arent agreement and 0.84 for test-retest reliability (Achenbach, 1991). Materials for Data Collection All sessions for data collection were vi deotaped with an RCA digital camcorder mounted unobtrusively on a tripod in the genera l proximity of the participant and the PI. During the intervention phase, a manual chess timer was used to cue a 30-second time sequence for using prompts. During the coding phase, the time intervals were cued by an audiotape in a portable tape recorder. The PI obtained data regardi ng treatment integrity using standard checklists once a week. Data for social validity was collected at the end of the study from Adam and Ben’s parent s using a 5-question questionnaire. Materials for the Intervention An individualized SS was written for each participant, ba sed on the criteria presented by Gray (1998). This SS was speci fically designed to address the targeted behavior, and was individualized for each partic ipant. Oneor two-word prompts for each targeted behavior were written on brightly colored 3 x 5 cards. Description of the Social Story Intervention First described by Gray and Garand in 1993, SS are based on an understanding of the cognitive skills required for so cial interaction, and “describ e social situations in terms of relevant social cues and of ten define appropriate responses” (p.1). Each SS is designed to bring predictability to a situation that may be overwhelm ing, confusing, or frightening to the individual with AS, and employs the vi sual learning strengths of individuals with AS to communicate concepts and ideas that pr ovide structure to activ ities of daily living, learning experiences, and social interaction.

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67 The SS is highly individualized, provides objective descriptions of a person, skill, event, concept, or social situation, is written with vocabulary and f ont appropriate for the individualÂ’s reading and compre hension levels, and incorporat es the individualÂ’s specific interests (Gray, 1998). The SS also considers the age and attention span of the individual for whom the SS is written. It is written from the perspective of that individual, using the first person; by observing how the individual wi th AS interacts with the environment, the author of the SS, usually a parent or teacher , focuses on what the individual for whom the SS is being written may see, hear, and feel in the targeted situation. However, because the individual with AS has difficulty with so cial understanding, the SS must leave no room for literal interpretation. There are up to four types of statements that can be included in the SS: descriptive, perspective, directive, and control. Not ever y SS will contain all four types of sentences, but all conform to specific criteria. Each t ype of sentence has a specific purpose and the ratio of the type of sentences within the story is very important. According to Gray (1998), the SS should describe more than direct . She recommends a ratio of one directive and/or control sentence to two to five de scriptive and/or pers pective sentences. The descriptive sentence objectively defi nes where a situation occurs, who is involved, what a specific task is, and why it is being done. The descriptive statement also introduces the main characters, and explai ns why people behave the way they do. The perspective sentence may describe the individua lÂ’s physical state or de sires, their internal feelings, or their perceptual perspectives . This sentence may also describe another personÂ’s thoughts, feelings, beli efs, or motivation. The directive sentence defines what is expected as a response to a given cue or situat ion, and directs behavior. It is best if this

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68 type of sentence is less restrictive, giving the individual a list of choi ces, rather than one specific suggestion. In some cases, this type of sentences may not even be needed. These types of sentences may be completed by the authors or by the adolescent. By the time a child with AS reaches adolescence, they can assist in the writing and development of the SS (Gray, 1998). When written as a partial sentence, the student is then encouraged to make predictions about pr oper responses and what needs to be done next. This type of sentence is then called a control statement, and allows the individual to control their own responses by “identifying m eaningful, personal strategies to handle difficult situations” (p.179), as well as incorporate their own style and interests into the story. Procedure Selection of Participants Participants were recruited by designat es of the Directors of Exceptional and Special Education departments at the D uval County School Board and Baker County School Boards by perusing their databases fo r those adolescents who met the inclusion and exclusion criteria provi ded to them by the PI. Those who met the inclusion and exclusion criteria were contact ed directly by designates of the Directors of Exceptional and Special Education departments at the Duval County School Board and Baker County School Boards, and asked if they would be inte rested in meeting with the PI to discuss participation in the research study. Those a dolescents and caregive rs who agreed to discuss participation were given the name and telephone number of the PI; the parents contacted the PI direct ly to set up an appointment for the initial meeting. The timeline for the research process can be seen in Table 3-2.

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69 The PI then met with the adolescents and their parents in their homes, where the purpose and procedure of the study, a descrip tion of the interven tion, and the ethical considerations of the research process, incl uding all risks and bene fits, were discussed with the adolescents and their parents, and their questions were answered. The informed consent for participation and videotaping and the form of assent, along with a preaddressed, postage paid envelope, was left with the adolescents and th eir parents to read and discuss privately. The adolescents and th eir parents were invited to discuss the process of participation privat ely, and informed that if they had any further questions, they could contact the PI by telephone at any time. Table 3-2. Timeline for Research Study Parameters Initial Visit PreBaseline Visit Weeks 1 & 2 (up to a 6-week delay) Week 3 & 4 Week 5 8 Week 12 General Information and explanation X Informed Consent and Assent forms Given X Questionnaires Completed (CQASB, HCSBS, CBCL) X Target Behaviors Identified X Social Story Written X Baseline (2-6 weeks) X Intervention (6-9 visits) X Fading / maintenance (9 12 visits) X Follow-up at 1month (1 visit) X

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70 If they agreed to participate in the stu dy, informed consents for participation and videotaping were signed by the parents, a form of assent was signed by the adolescent participants, and both were forwarded by the parents to the PI in the pre-addressed, postage-paid envelope provided by the PI at the time of the initial meeting. The PI then contacted the parents to sche dule a pre-baseline visit, du ring which time Adam and Ben’s parents completed the CQASB, the HCSBS, and the CBCL. The questionnaires were analyzed and the results discussed with Adam and Ben’s parents during the same meeting, and two target behaviors were identified. Ch arlie and Danny’s parents refused to complete the questionnaires, stating that they felt that the information was confidential. Since they were willing to discuss their children’s behavi ors, the PI felt that the same information could be gained verbally. Once the target behaviors for each participant were identified, they were operationally defined with the he lp of the parents, and a more socially acceptable form of behavior was identified. During the next week, the PI sat down with each participant a nd their parents and wrote the participant’s SS, using the guideline s as described by Gray (1998). Each social story was then written in bl ack, 18–24 font print on 8” by 11” white paper. The pages were then laminated and secured, in order, in a three-prong folder. Cue words were identified for each SS, and written in black i nk using block letters on 3” x 5” cards that were light blue on the blank side and bright yellow on the side where the cue words were written. A calendar was also marked with the da ys of the sessions, and the weeks were clearly marked to show a progression towa rds the end of the study. At the beginning of each session throughout the study, that session would be crossed off and the remaining

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71 sessions counted, so that the participant a dolescent could visualize the remaining number of sessions and be aware of when the study would end. Baseline The PI videotaped the participant duri ng the baseline phase for 15 minutes a day, three times a week, for at least two weeks, or until the baseline data demonstrated stability. During baseline, the participantÂ’s ta rget behaviors were counted (see Appendix C). The camcorder was positioned on a tripod, in the corner of the chosen room in the participantÂ’s home so that the participant and PIÂ’s faces were s een without obstruction. The camcorder was turned on by the PI before the participant entered the room and was not turned off until the participant left the ar ea, so that at no time would the participant observe the PI adjust the camcorder. During the baseline phase, the participant entered the room and sat at a table or desk with the PI, where a conversation on a topic of interest to the participant took place. There was no social story intervention, inappropriate behavior was not corrected, and correct beha vior was not cued. The videotapes were viewed by the PI, and the target behaviors we re counted. Data colle cted by the PI was graphed, for visual analysis, within twen ty-four hours of the occurrence. Once the analysis of data was stable or six sessions had been completed, the intervention phase began. Baseline data continued to be collected on the other participants. Intervention Phase The intervention phase sessions continued three times a week for two weeks, or until the analysis of data became stable The participant entered the room and sat at the table as in the baseline phase. For the firs t 10 minutes of the sessi on, the participant read the SS aloud to the PI and then they discusse d the content of the SS. The PI then asked three comprehension questions to ascertain th at the participant understood the SS and the

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72 behaviors recommended. These que stions were as follows: to what did the SS refer, what do other people want you to do, and what do you need to do to address the problem. Once the participant was able to answer the co mprehension questions with 100% accuracy, the participant was encouraged to re-read the SS quietly one or two additional times. The SS was placed on the table next to the participan t, so the participant would have easy access to it at anytime during the session. During the first session of the intervention phase, the PI showed the participant the cue words on the index cards, and explained what they meant. The PI explained that the cue card woul d be used to remind the participant to use the recommended behavior. The participant wa s then asked to restate the meaning and intended use of the cue words in their own word s, to insure understa nding of the meaning of the prompt. These cards were placed f ace down on the table during the conversation, with the blue side showing, and used by the PI to prompt the participant as needed during the intervention phase. Once the participant was able to answer the comprehension questions, had re-read the SS, and could verbalize the meaning of the cue words, a 15-minute conversation took place. The cue cards were placed face down next to the PI. A manual chess timer was held in the PIÂ’s hand so that only the PI c ould see it. This timer was set for 30-seconds increments, and was reset when a prompt was given by the PI by tapping the timer button. If the participant di d not respond with the recommended behavior within 30 seconds of the first opportunity, the PI would place the cue card face up in front of the participant with the ye llow side up, but would not point to it or say the cue words aloud. The timer was then reset for an additional 30 seconds. If the part icipant still did not respond with the recommended behavior after the 30 second timer blinked, the PI pointed

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73 to the cue word, and again reset the timer for 30 seconds. If the participant did not respond with the recommended behavior in th e next 30 seconds, the PI again pointed to the cue word and verbalized the words al oud. The timer was then reset again for 30 seconds. If the participant still did no t respond, the PI would have stopped the conversation, asked the participant to re-read the SS aloud and again asked the comprehension questions. This process was re peated until the partic ipant responded with the recommended behavior or the 15-mi nute conversation session ended. If the participant did respond appropriately, the PI retrieved the cue card and replaced it face down on the table in front of th e participant, blue side up. On ce the analysis of data was stable or six sessions had been completed, the fading phase began. Fading Phase and Maintenance Once the analysis of the intervention da ta became stable or two weeks of intervention sessions had been completed, th e SS intervention was faded by decreasing the reading frequency to twice weekly for one week, then once weekly for one week, then withdrawn completely, with videotaping a nd data collection continuing until for an additional six sessions to asse ss for short-term maintenance. Cue cards remained on the table as prompts when the SS was read, but we re placed in a drawer for the sessions that the SS is not read. When the SS was not rea d, it was also placed in the drawer. The weekly videotaping ended after eight w eeks, regardless of data stability. Follow-up The PI returned to the setti ng one month after the comple tion of the study to assess for long-term maintenance. The session was videotaped, using the same procedure as before. The PI again sat at th e table with the pa rticipant, and had a conversation. The SS

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74 was not read prior to the session, and cue words were not used. The same targeted behaviors were counted and graphed visually using Microsoft Excel. Data Collection All sessions of data collection were videotaped with a RCA miniature videocamcorder. Videotaping began just before the participant entered the room in which the intervention takes place, and ended after the pa rticipant left the room . During the baseline phase, the length of recordi ng was approximately 15-20 mi nutes, which was long enough for a short conversation between the PI a nd the participant. During the intervention phase, the length of recordi ng was 25–30 minutes in leng th, including the 10–15 minutes allotted to read and discuss the SS, and a 15-minute conversat ion between the PI and the participant. Once fading of the intervention began, the length of recording once again was 15-20 minutes, since no time was require d to read and discus the SS. The videotapes were viewed by the PI , and data recorded using a 10-second interval recording proc edure for the entire 15-minute sessi on. The targeted behaviors, as well as the number and type of prompts need ed to illicit the recommended behaviors, were counted. The behavior was recorded as occurring only once an interval if it was observed during any portion of that 10-sec ond interval. During the viewing if the videotape and the counting of the targeted be haviors, an audiotape that had been prerecorded with a single beep every ten sec onds would cue the PI at the end of each interval. The videotape would then be paused by the PI so that the behaviors observed could be recorded on the data collection sh eet. Once the data were recorded, the PI resumed the videotape. The number of inte rvals during which the behaviors occurred were totaled, and divided by the total number of intervals. This yiel ded the percentage of targeted behaviors per session. This rate of response was then graphed, using Microsoft

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75 Excel, for visual analysis. The number and type of prompt was also graphed using Microsoft Excel for visual analysis. IOA A senior second-degree nursi ng student, who was naïve to the purpose of the study and who has no previous experience in codi ng from a videotaped session, was trained by the PI to be the second observer. The operationa l definitions for the target behaviors were explained and a videotape of these behavi ors was shown. Training and coding of all target behaviors by the second observer was done with the PI until a calibration agreement of 90-100% was obtained. The IOA calibration procedure was repeated for each participant. Once IOA calibration was within the acceptabl e range for all targeted behaviors for participant, the PI randomly selected five mi nutes of each session recorded that week, for a total of 15 minutes for each participant or 33% of the sessions for each participant, for the second observer to count the targeted behaviors. The second observer viewed and coded the weekly sessions for each partic ipant independently. This data was then compared to the data obtained by the PI. In terobserver agreement was calculated on an interval-by-interval basis for occurrence of ta rget behaviors by calculating the number of agreements divided by the number of agreements plus disagreements, and multiplying by 100 (Kazdin, 1982). A percentage of 80% or bette r was acceptable to s upport IOA. If the IOA had ever been less than 80%, which it was not, the operational definitions and coding process would have been reviewed by the PI with the second observer, and IOA calibration procedure would have continued until IOA was at least 80%.

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76 Treatment Integrity Data for treatment integrity for each part icipant were collected once a week by the PI, using a checklist that de tails the steps of the study (s ee Appendix D). The number of steps completed correctly was divided by the total number of steps, and then multiplied by 100. A score of 100% meant that treatment integrity had been achieved. If the score was less than 100%, the PI corrected any de ficiencies before the next session. Social Validity Following the end of the study, the parents were asked to complete a 5-question questionnaire, with a possible total of 25 points, to assess their perceptions regarding social validity of the SS (see Appendix E). If the total amount of points per questionnaire was greater than 20, the intervention was considered to be socially valid. Only Adam and BenÂ’s parents completed th e questionnaire. Results were used to assess the parentÂ’s perceived efficacy of the intervention. Charlie and DannyÂ’s father did not complete the questionnaires for social validity. He felt he could not answer the questions appropriately, as he had not been around his sons since the study had been completed. Data Analysis All data coded during the study were graphe d daily using Microsoft Excel. All data were evaluated graphically via visual analys is after each session in terms of a) the magnitude of the response of the dependent vari able to the independent variable to assess the effectiveness of the independent variable, b) the percentage of overlap to assess the strength of the independent variable, and c) th e trend analysis to facilitate prediction of future behaviors.

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77 CHAPTER 4 RESULTS This chapter will describe the results obtained from the analysis of data. Using a multiple baseline across participants, 15-minute sessions were videotaped, and data were collected using interval recording to code targeted be haviors and prompts. There were four participants. All comple ted the study through the second week of maintenance, but only three completed a one-month follow-up se ssion. One participant did not have a follow-up session because of parental refusal. Participant 1 Adam Targeted Behavior – Interrupting Adam’s social story ([SS]; see Appendix F) was written for his targeted behavior of interrupting others during pe riods of conversation. His ba seline revealed that he interrupted an average of 41% of the time, with a frequency range of 40% to 41.7%. After the SS was introduced, Adam’s interruptin g frequency initially decreased to 28.3%. By the third session, the frequency had decr eased to 13.3%. After the fourth session, Adam was no longer interrupting at any tim e during the 15-minute session. The average frequency of interrupting for all sessions during the intervention phase was 6.9%, with a range of 0% to 28.3% (see Figure 4-1). Fading began after the fourteenth session. During session 15, the SS was not read and the cue cards were placed out of sight in a drawer prior to the start of the session, Adam’s frequency of interruptions increased to 5% for that session. During session 16, the SS was read and the cue cards were us ed; and the frequency of interruptions

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78 decreased to 1.7%. Although th is is a decrease from se ssion 15, the frequency of interrupting was an increase from the final sessions of the intervention phase, when Adam was not interrupting at all. The SS a nd cue cards were not used during session 17, and AdamÂ’s frequency of behaviors again increased to 3.3%. The SS intervention was used for the last time during session 18, with Adam continuing to interrupt 1.7% of the sessions. Although the frequency of interruptions during the next sess ion again increased to 3.3%, which was AdamÂ’s pattern during the fading process when the SS was not read, the frequency of interruptions decreased to 1.7% for the ne xt two sessions even though the SS and cue cards were not used. The averag e frequency of interrupting for all sessions during the fading phase wa s 2.8% (see Figure 4-1). During the maintenance phase, the averag e frequency of interrupting for all sessions was 8.3%. At the beginning of th e maintenance phase, the frequency of interruptions increased to 3.3% for session 22 but decrease d again to 1.7% for session 23. By session 24, however, AdamÂ’s frequency of interrupting has increased to 13.3%, to 16.7% by session 25, and 13.3% by session 26. Du ring his one-month follow-up session, his frequency of interrupting had in creased to 26.7% (see Figure 4-1). Prompts Once the SS was started, Adam required four visual prompts and one pointed prompt for the first two sessions, two visual prompts and one pointed prompt the third session, but only one visual prompt the fourth session. Thereafter, he required no prompts until fading. Once fading began, Adam only requi red one visual prompt per session when the SS was read (see Figure 4-2).

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79 Participant 2 – Ben Targeted Behavior – Turn Taking Ben’s SS was written for the targeted beha vior of turn-taking (see Appendix G). During his baseline, it was not ed he usually failed to e ngage in turn-taking during a conversation, with an average turn taki ng frequency of only 12.2%, with a range of frequency between 6.7% and 16.7%. Once the SS was started, the frequency of turn talking increased to 28.3% dur ing the first session, and to 40% by the third session. During the rest of the intervention phase, th e percentage of turn taking stabilized during the three final sessions at 40%, with an overa ll turn taking average of 37.9% for the eight sessions of the intervention phase (see Figure 4-3). During fading, the SS was read twice th e first week and only once the second week. Turn taking frequencies during this phase ranged from 36.7% to 40%, with an overall average turn taking freque ncy of 38.1% for the six sessions. For the first week during the maintenan ce phase, the frequency of turn taking remained stable at 35%. For three of the next four sessions during this phase, the frequency of turn taking was decreased to 31.7%. The average frequency of turn taking for all seven sessions was 33.6%, with a ra nge for 35% to 31.7%. Ben’s one-month follow-up session remained stable at 31.7%. Prompts Ben required five visual prompts, three poi nting prompts, and three verbal prompts during the first intervention session, but those numbers decr eased to only two visual prompts by the fourth intervention session. After that, and until fading, Ben did not require any further prompts. During the enti re fading process, he required all three

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80 prompts only once, and, both times, the prompt s were delivered within the first three minutes of the sessions (see Figure 4-4). Participant 3 – Charlie Targeted Behavior – Turn-taking Charlie’s targeted behavior was also turn taking (see Appendix H). During baseline, which was five weeks in length, Charlie‘s average turn taking frequency was 18.5%, with a range of frequencies between 11.7% (during session 2) to 23.2% (in session 9). The turn taking in creased overall after the firs t few weeks of the baseline phase, and can probably be attributed to the development of a more comfortable relationship between the PI and the participant (see Figure 4-5). The SS intervention was introduced in sessi on 17, with an incr ease in turn taking frequency from 18.3% during session 16 to a frequency of 56.7%. The turn taking frequencies continued to increase during the intervention phase, with a range of frequencies from 56.7% to 68.3%, and an aver age turn taking frequency of 66% for the eight sessions. During the fading and maintenance phases, the turn taking frequencies remained stable, with a range of frequencies fr om 60% to 68.3%. The average turn taking frequency for the fading phase was 66.7% for th e six sessions. For the six sessions of the maintenance phase, the frequency of turn taking was 64.7%. However, the frequency of urn taking at his one month followup session was stable at 65%. Prompts Charlie initially needed all three type s of prompts to remember to respond appropriately during the interv ention phase (see Figure 4-6). After the first week of the intervention, Charlie needed one or two visual prompts and one pointing prompt a

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81 session. Throughout the rest of th e intervention phase, Charlie continued to need a visual prompt, usually in the first five minutes of the session. Once fadi ng began, Charlie still needed two visual prompts and one pointi ng prompt every session to remind him to respond appropriately. Participant 4 – Danny Targeted Behavior – Interrupting Danny’s targeted behavior was interrupti ng. Danny’s SS targeted his tendency to interrupt the other person during a convers ation (see appendix I). Danny’s baseline was extremely long, at almost seven weeks. Duri ng the first ten sessions, Danny had a wide variation in the frequency of interrupting, with a range from 45% to 81.7%. However, during the last ten sessions, the frequency of interrupting stabilized, with a range of interrupting from 65% to 73.3%. The overall frequency of interrupting for the baseline phase was 49.7% (see Figure 4-7). During the first intervention sessi on when the SS was introduced, Danny’s frequency of interrupting dropped to 20%. Th is frequency decreased to 5% during the second intervention session, and remaining unde r 6.7% during the rest of the intervention phase. The average frequency during this phase was 7% for the nine sessions, with a range of frequencies between 3.3% and 20%. The average frequency of interrupting in creased to 9.1% during the fading phase, with the frequencies for these seven sessi ons ranging from 5% to 10%. During the maintenance sessions, the average frequency of interrupting increased significantly to 26.9%, with a range of frequencies from 20% to 33.3%. Unfortunately, Danny did not have a one month follow-up visit.

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82 Prompts During his first intervention session, Danny required all three types of prompts (see Figure 4-8). However, from the s econd intervention session through the last maintenance session, Danny required visual prompts only. He requi red four visual prompts during the first intervention session and two visual prompt s during the second intervention session. He continued to require only one visual pr ompt during the rest of his intervention phases and throughout the fading sessions. However, dur ing the last session of his maintenance phase, he did require tw o visual prompts and one pointing prompt. Summary of Intervention Results Visual analysis of the data reveals that the SS intervention was effective in eliciting a change in the targeted behaviors (see Figure 4-9). For two of the f our participants, Ben and Charlie, this response was maintained during the fading and maintenance phase and at the one month follow-up session. There was no overlap in data for any of the four participants. The magnitude of the response of the targ eted behaviors to the SS was significant in each of the participants. The response for each participant was not immediate, but changed gradually over the first two or three sessions. However, for the entire intervention phases overall, there was a str ong correlation between th e SS intervention and the response in the targeted behavior s. The data reveals a cause and effect relationship. The analysis also reveals that maintenan ce over time was not achieved with at least one of the participants, Adam. There is also a question of maintenance over time for Danny, but this information was not availa ble as his one-month follow-up session was not completed.

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83 Each of the participants required prom pts during each of the phases of the study. Adam and Ben did not need any of the prompt s after the SS had been in use for the first three to four sessions. Once fading began, Adam needed one visual prompt each session, but it was given early in the 15-minute sessi on, and no further prompts were needed. Ben needed both a visual and a pointing prompt each session during fading, but these were also given in the first two minutes of th e session, with Ben not requiring any further prompting. Charlie and Danny required multip le prompts throughout the study. By the middle of the intervention phase, each only requ ired visual prompts administered early in the session. During fading, each required a vi sual and a pointing prompt. Again, these prompts were administered within the first two minutes for Charlie and within the first four minute for Danny. The use of prompts does question the independence of the SS intervention. Although two of the four partic ipants were able to respond without any prompts for at least half of their interventi on phase, their inability to res pond without prompts after only one session suggests that the SS may need further study to determine strength and independence. Since it is known that indivi duals with autism spectrum disorders and individuals with AS are visual learners and learn faster with the aid of prompts (Quill, 1997; Wing, 2005), the results of the data an alysis are not surprising. However, it may warrant further study to determine what prom pts are the most effective and how they could be used to strengthen the effect of the SS intervention. Inter-observer Agreement Inter-observer agreement (IOA) was comple ted weekly for each participant for a total of 32% of the sessions. Five-minute in tervals from each of their three sessions completed that week were randomly chosen by the PI, and coded independently by a

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84 second coder who had been taught by the PI. The operational de finitions and coding process were explained, with practice sessi ons completed until IOA was over 90%. This training was accomplished during a two day se ssion, and IOA data collection started the first week of the baseline phase. Table 4-1. Interobserver Agreem ent (percentage) per Session % Adam Ben Charlie Danny WEEK 1 92 88 98 92 WEEK 2 96 90 99 98 WEEK 3 91 94 95 97 WEEK 4 92 92 97 95 WEEK 5 97 94 95 96 WEEK 6 92 88 92 84 WEEK 7 88 90 93 96 WEEK 8 90 94 88 88 WEEK 9 86 86 94 92 WEEK 10 90 86 90 WEEK 11 92 94 WEEK 12 86 92 WEEK 13 88 WEEK 14 90 The overall average IOA for the four participants was 91.7 % (see Table 4-1). AdamÂ’s average IOA for all of his sessions was 91.6%, with a range of 86% to 97%. BenÂ’s average IOA for his sessions was 90.6% , with a range of 86% to 94%. CharlieÂ’s average IOA was 92.9%, with a range of 86% to 99%. DannyÂ’s average IOA was 92.3%, with a range of 84% to 98%. In general, the IOA was always above 84%, as the operational definitions were well understood by the PI and the second obser ver. The main problem occurred when a behavior was observed over two intervals and was coded in one interval by one observer and in the other interval by the other observer. There were also disagreements about whether the participant ha d interrupted or responded appropriately, but these

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85 disagreements were minimal. When disagreeme nts did occur, the PI and the second coder reviewed the videotape again, and decided together how to code the discrepancy. Treatment Integrity Treatment integrity data were collected weekly by the PI, using the Treatment Integrity Checklist (see Appendix F). On thos e weeks when the SS was not in use, the items on the checklist that concerned the SS were considered cont rolled and full credit was awarded. Overall, the average treatment inte grity for all of the participants was 94%, with a range of scores from 90% to 100% (see Table 4-2). Treatment integrity was 98% for AdamÂ’s nine weeks of sessions, with a ra nge of 90% to 100%. Treatment integrity for BenÂ’s 10-weeks of sessions was 95%, with a range of 90% to 100%. Table 4-2. Treatment Integrity (percentage) per Session Adam Ben Charlie Danny WEEK 1 90 90 90 90 WEEK 2 100 90 100 100 WEEK 3 100 100 90 90 WEEK 4 90 100 90 90 WEEK 5 100 100 90 90 WEEK 6 100 100 90 90 WEEK 7 100 90 90 90 WEEK 8 100 90 90 90 WEEK 9 100 90 90 90 WEEK 10 100 90 90 WEEK 11 90 90 WEEK 12 90 90 WEEK 13 90 WEEK 14 90 Problems with AdamÂ’s treatment integrity involved his reluctance to reread his SS after his comprehension questi ons were answered appropriate ly. He often remarked that he thought that it was a waste of his time, but he tried to adhe re to the procedure. He was successful for seven out of nine weeks. At fi rst, BenÂ’s problem with treatment integrity involved having a quiet place wh ere the session could take place. Even though the dining

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86 room was set up to be private and quiet, Ben had many siblings who often wanted to interrupt. After a discussion with his parents, they made sure that the other siblings were not allowed to disrupt the se ssions. However, during the seventh and eighth week, Ben also did not want to read his SS silently for several of the sessions. Once the rationale for maintaining treatment integrity was discu ssed, Ben became more complaint with the procedure. Treatment integrity was more difficult to control for Charlie and Danny, as it was difficult to have the sessions at the same time every day, for multiple reasons. Average scores for treatment integrity for each of the brothers were 91%, with a range of 90% to 100% for each. Social Validity Adam and BenÂ’s parents are the only one s who completed the social validity questionnaire, because Charlie and DannyÂ’s mo ther was hospitalized and their father decided to end their particip ation in the study. AdamÂ’s pare ntsÂ’ questionnaire had a total score of 25 out of 25, which demonstrated soci al validity, and they commented that they were pleased with the results of the SS. They had made comments during the study about the improvements they were seeing in Adam Â’s interrupting beha viors and thought the intervention would be useful in the futu re. BenÂ’s parents also thought the SS had produced positive results for their son, scoring 25 out of 25 on the questionnaire. They commented that they would prefer to use th e SS regularly as they had observed that he responded best when his SS was read regularly. These social validity results reveal that us ing the SS as an intervention does help correct those behaviors that interfere with the maintenance of socially appropriate behaviors. Learning to respond appropriately is important because reciprocity during a

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87 conversation is one way to maintain a soci ally valid relationshi p. Learning to avoid interrupting is important not only in social situations, but also in a structured environment such as school. If a child continues to inte rrupt, or does not respond appropriately in these types of situations, not only ar e they deprived of the opportuni ty to learn in a structured classroom setting, but they limit learning oppor tunities of their peers and classmates. These disruptive behaviors may lead to re jection by peers, ther efore decreasing the occasions in which the adolescent with AS can observe and imitate appropriate social behaviors.

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88 0 5 10 15 20 25 30 35 40 45 135791113151719212325272931333537394143454749 SESSIONSPERCENTAGE INTERRUPTING ONE MONTH FOLLOW-UP INTERVENTION FADING MAINTENANCE BASELINE Figure 4-1. Graph of Ad amÂ’s Targeted Behavior

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89 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 123456789101112131415161718192021222324252627282930313233343536 SessionsNumber per Session Visual Prompt Pointing Prompt Verbal Prompt Intervention Fading Baseline Maintenance Figure 4-2. Graph of AdamÂ’s Prompts

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90 0 5 10 15 20 25 30 35 40 45 135791113151719212325272931333537394143454749 SESSIONSPERCENTAGE TURN-TAKING BASELINE INTERVENTIONFADING MAINTENANCE ONE MONTH FOLLOW-UP Figure 4-3. Graph of Be nÂ’s Targeted Behavior

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91 0 1 2 3 4 5 6 123456789101112131415161718192021222324252627282930313233343536 SessionsNumber per Sessions Visual Prompt Pointing Prompt Verbal Prompt SS StartedFading Baseline Maintenance Figure 4-4. Graph of BenÂ’s Prompts

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92 0 10 20 30 40 50 60 70 80 135791113151719212325272931333537394143454749 SESSIONSPERCENTAGE TURN-TAKING BASELINEINTERVENTIONFADINGMAINTENANCE ONE MONTH FOLLOW-UP Figure 4-5. Graph of Char lieÂ’s Targeted Behavior

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93 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 123456789101112131415161718192021222324252627282930313233343536 SessionsNumber per Session Visual Prompt Pointing Prompt Verbal Prompt SS Started BaselineFading MaintenanceFigure 4-6. Graph of CharlieÂ’s Prompts

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94 0 10 20 30 40 50 60 70 80 90 135791113151719212325272931333537394143454749 SESSIONSPERCENTAGE INTERRUPTING BASELINE INTERVENTION FADINGMAINTENANCE Figure 4.7. Graph of Da nnyÂ’s Targeted Behavior

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95 0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 123456789101112131415161718192021222324252627282930313233343536 SessionsNumber per Session Visual Prompt Pointing Prompt Verbal Prompt Intervention Baseline Fading Figure 4-8. Graph of DannyÂ’s Prompts

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96 0 5 10 15 20 25 30 35 40 45 135791113151719212325272931333537394143454749ONE MONTH FOLLOW-UP FADING ADAM INTERRUPTINGBASELINE INTERVENTION MAINTENANCE 0 5 10 15 20 25 30 35 40 45 135791113151719212325272931333537394143454749 BEN TURN TAKINGONE MONTH FOLLOW-UP 0 10 20 30 40 50 60 70 80 135791113151719212325272931333537394143454749 ONE MONTH FOLLOW-UP CHARLIE TURN-TAKING 0 10 20 30 40 50 60 70 80 90 135791113151719212325272931333537394143454749 DANNY INTERRUPTING Figure 4-9. Comparison of the effects of the SS intervention across participants

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97 CHAPTER 5 DISCUSSION This chapter will begin with an overview of the study, and then a discussion of the results of the study will follow. Included in this discussion will be a dialogue about the occurrence of unexpected discove ries. The limitations of the study will be described and implications for future clinical practice will be delineated. Finally, recommendations for future nursing research will be defined. Overview This study evaluated the effects of a social story (SS) intervention on the acquisition of social sk ills in adolescents with Asperger Â’ syndrome (AS). With input from the parents and the participant themselves, beha viors that interfered with the participantÂ’s ability to communicate with others were id entified, and operational definitions for those targeted behaviors were written. A SS was wr itten by the Principal Investigator (PI) and the participant, using the guidelines of one di rective or control sentence to each four or five descriptive or perspective sentences (G ray, 1998). In addition, the participants added their own control sentences, with which they we re able to list specific actions they could take to improve their conversation skills. Us ing a multiple baseline across participants, the SS intervention was introduced only after stable baselines had been established. The targeted behaviors, and the prompts needed to reinforce the intervention, were measured and graphed for visual analysis. Overall, th e results demonstrated improvement in the targeted behaviors.

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98 Discussion of the Results During the baseline phases, the rates of targeted behaviors were assessed, and an analysis of these rates reveal ed that interpersonal communi cation was hampered by a lack of socially appropriate beha viors. Once the SS intervention was introduced, there was an improvement in the targeted behaviors for all of the participants, which clearly identified a functional relationship. This effect was maintained in two of the four participants, suggesting that the SS does have some effect in maintaining the change in behaviors over time. Because there is very litt le research that addresses the use of SS in adolescents, and in adolescents with AS specifically, the resu lts of this study extend the scant amount of research that demonstrates the effectiveness of the SS for adolescents with AS (Bledsoe, Myles, & Simpson, 2003; Rogers & Myles, 2001). Adam Visual analysis of the data revealed th at Adam had a decrease in interrupting behavior during the intervention phase, and that this response conti nued during the initial sessions of the fading phase. However, the fr equency of interrupti ng was erratic during the maintenance phase, especially in the final sessions. At the one-month follow-up session, the frequency of interruptions had incr eased significantly. Vi sual prompts appear very beneficial to Adam, and may be the only prompt he would need to remind him of the content of the SS. Adam was very serious about complying w ith the directions of his SS, and would concentrate very intensely during videotapi ng. AdamÂ’s initial response to his SS was impressive, but when the SS was removed fr om his possession, his behaviors began to return to his baseline. Because of this response, his parent s decided to make his SS and cue card available to him at all times. They had also decided that they would try writing

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99 SS about other problems Adam was having w ith environmental problems, such as remembering daily hygiene procedures, prep aring for company, and organizing his day. Adam will be going away to college in the fall , so he and his parents are making lists of possible scenarios for which a SS could be wri tten and read by Adam when that situation arises. Ben Visual analysis of the data revealed th at BenÂ’s turn-taking behavior did respond positively to the SS intervention. However, after ju st four sessions, it is observed that the frequency of turn-taking behavior decreased for one of the sessions before stabilizing. The reason for this one time decrease is questi onable. Ben did not appear to be feeling any differently than usual, he read his SS and answered the comprehension questions without any difficulty, and his family and pers onal life did not seem to be under any new stressors. For the rest of the intervention phase, the frequency of turn-taking behavior remained stable, so it appears that the da ta for this one session may not be of any significance to his response dur ing the intervention phase. However, once fading was started, the fr equency of turn taking decreased, and continued to decrease sligh tly until the maintenance phase. A trend analysis of the maintenance data revealed that the frequency of turn taking stabilized and that frequency of turn taking remained stable at the one-month follow-up session. Overall, Ben responded well to the SS wh ile it was being actively read on a regular basis. Long term maintenance is questi onable, and it would be beneficial to assess BenÂ’s responses one more time, approximate ly one or two months after the studyÂ’s completion.

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100 It became noticeable that BenÂ’s turn taki ng frequencies were not the only socially unsuccessful behaviors that were improving. An additional review of his videotapes revealed an unexpected discovery that hi s frequencies of interrupting were also responding to the SS intervention. 0 10 20 30 40 50 60 70 80 135791113151719212325272931333537394143454749 SessionsFrequency Ben's SS for turn taking started Ben's Interrupting One month follow-up Figure 5-1 The effects of BenÂ’s SS for turn ta king on the frequency of BenÂ’s interruptions Although BenÂ’s SS primarily addressed tu rn taking, it also briefly addressed interrupting. Since both of th ese behaviors were addressed in the SS, it was concluded, based on the visual analysis of the data, that the SS was responsible for all of the changes (see Figure 5-1). The average frequency of interrupting during th e baseline phase was 63.2%, with the range of frequencies from 56.7% to 70%. Once the SS for turn taking was introduced, the frequency of interruptions decreased dramatically to an average of 26.9%, with a range from 23.3% to 31.7% . The average frequency during fading remained stable at 27.8%, with a rang e of 21.7% to 31.7%. During the maintenance phase, the average frequency of interruptions increased slightly to 30.2%, with a range in

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101 frequencies from 26.7% to 33.3%. At the one month follow-up session, the frequency of interruptions had increased to 33.3%. This is the first study in which one SS a ddressed two behaviors successfully. This is different from the study by Norris and Datillo (1999) where multiple SS, each addressing one behavior, were in troduced at the same time, bu t the results of that study were disappointing. Although Gray (2001) ma intained that the SS should only address one behavior at a time, most of her SS are wr itten for those individu als who were not as high functioning as the part icipants in this study. Charlie Visual analysis of a graph of the data re veals that the intervention did increase the frequency of turn taking. This frequency di d maintain throughout the fading phase, but there was a decrease in frequency as the main tenance phase was initiated. This decrease in frequency of turn taking continued for two sessions. Then the frequencies improved and stabilized, and remained stable at the one-month follow-up session. The reason for these changes was ini tially perplexing. However, during the maintenance phase, Charlie was found to be in possession of 2” x 2” yellow paint sample card from Home Depot, which he held in his hand during the 15-minute sessions. During one of his last maintenance se ssions, he finally confessed th at the yellow paint sample card reminded him of the yellow cue card. He commented that, “remembering to take turns is a lot easier when I can look at the ye llow card. I just think of the color yellow and I remember”. Charlie was the only partic ipant who used an additi onal prompt, which he was using to replace prompts as they were faded. It is unclear whether the paint sample card

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102 helped Charlie remember to use his new skills, or if it helped him retain the elements of the SS. However, this demonstrated CharlieÂ’s ability to process the purpose of the SS and the prompts, and to create his own prompt that allowed him to self-manage his behavior. Self-management interventions have been shown to produce positive changes in targeted behaviors (Barry & Singer, 2001; Mancina, Tankersley, Kamps, Kravitz, & Parrett, 2000; Mithaug & Mithaug, 2003; Newman, Reinecke, & Meinberg, 2000). Whether Charlie could have maintained his changes without the pa int sample card can only be surmised, as generalization probe s and a longer follow-up period were not included in this study design. The incorporati on of a self-management tool could be of benefit in a future study. Danny Visual analysis of the data reveals that Danny had a marked variation in initial turn taking frequencies during the baseline phase. This variability was representative of DannyÂ’s inability to routinely maintain turn taking behaviors with strangers, a problem discussed candidly by Danny and his parents during the first week. As the baseline continued, these turn taking frequencies stabiliz ed. One rationale for this stabilization is that by week three, the PI was no longer a stranger and a relations hip was established. Although Danny had a significant decrease in the frequency of interrupting after the intervention was introduced, his frequencies of interrupting began to increase as soon as the intervention was faded. Because Danny did not have a one-month follow-up visit, it is difficult to predict future trends. It was noted that Danny had an interesti ng change in his own frequency of turntaking when CharlieÂ’s SS for turn-taki ng was introduced. DannyÂ’s videotapes were reviewed to measure his frequency of turn taking, with interesting results (see Figure 5-

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103 2). Danny’s turn taking frequencies not only in creased in response to Charlie’s SS, but those behaviors were also maintained during the fading and maintenance phase. 0 10 20 30 40 50 60 70 80 123456789101112131415161718192021222324252627282930313233343536373839404142 SessionsFrequency Turn taking CHARLIE'S SS STARTED DANNY'S SS STARTED Figure 5-2. Danny’s response to Charlie’s SS for turn taking The PI discussed the new data with the two participants and discovered that not only did Charlie read his SS to his brother on a regular basis, they were reinforcing the lessons for each other by reminding each othe r to “take turns”, the words from Charlie’s prompt card. Although this unexpected discove ry confounded the resu lts of this study, it supports previous research that suggests the use of siblings helps reinforce social skills training and helps the participants maintain the learned behaviors over time (Baker, 2000). It would have been interesting to eval uate if the same response would have been seen if Charlie had been assigned a differe nt targeted behavior and a different SS. However, whether it was the SS by itself, th e sibling support, the role-playing, or a combination of the three that produced this re sponse is a question for future research.

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104 Limitations of the Study One of the limitations of the study was the quality of the opera tional definition of turn-taking. Although the opera tional definition was broad enough to encompass all responses that may have been construed as helping to guide and c ontinue a conversation between two people, it did not allow for the qua lity of the response. When the participant responded, sometimes it was not appropriate for the context of the conversation. Unfortunately, if the response was one that wa s defined as appropriate , then it had to be counted as so. This was particularly noticea ble with Adam’s responses. No matter what was being discussed, he would reply with, “aw esome, tell me more about that”. Charlie also often responded automatically, with res ponses of “really, what else happened”, or “what happened next”. It would have been beneficial to the st udy if the operational definition had also defined responses as appr opriate only if the re sponse was appropriate within the context of the conversation. Another limitation was the amount of inte rference by Charlie and Danny’s parents. Initially, the parents refused to complete a ny of the demographic information, but since they were willing to discuss their chil dren verbally, this was not a concern. Unfortunately, it was not until the study had star ted that this interference became intense. After the SS were written, the triplet’s fath er insisted on reading each one and made several comments about the composition of the SS. It was only after extensive explanation that the ratio of sentences was important for th e integrity of the design that he was willing to allow the SS to be used. During the first few sessions, he insisted on being present in the next room where he could see his children, which cause tension between the PI and the participant, and tension between the participants and their father. Fortunately, after the first w eek, he left on business and a routine was established. When

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105 he returned, he was only at home in the morn ings, so all sessions were scheduled for the afternoon. Towards the end of th e study, after the boys went to live with their father, he refused any further participation in th e study, eliminating DannyÂ’s final one-month follow-up visit. Another limitation was that it was unreal istic to expect compliance with the SS storage between visits. Even though the PI had left instructions with Charlie and DannyÂ’s mother that the SS were to remain in the desk drawer in between sessions, Charlie secretly shared his SS with his brother, with the results as discussed previously. Initially, treatment integrity was often di fficult to control, as scheduling around outof-home trips was often frustrating. As the sessions continued, more of a routine was established at Adam and BenÂ’s homes, but Charlie and DannyÂ’s schedule remained difficult to control. The PI finally decided to break up the sessions, with Adam and Ben scheduled for three days a week and Char lie and Danny scheduled on the alternative days. Even then, it often meant waiting an hour or more for them to get home. Toward the end of the study, it became difficult to ga in access to Charlie and DannyÂ’s home, and the PI often had to call the mother on the phone several times while in the driveway before she would open the door. Treatment integrity at BenÂ’s home was also initially difficult to control because of the large family and limited sp ace. After discussing the problem with the parents, the noise level was significantly reduced and tr eatment integrity was no longer a problem. Another limitation is the selection pro cess. All the participants were male. Although there were two female adolescents wi th AS interviewed, th ey decided not to participate because of the time involved. In addition, all of the participants were home-

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106 schooled, which limited the amount of exposure they had for generalization probes. It is important to be able to assess whether the intervention is effective across settings and situations. Being in the controlled envir onment of the home does not allow for the complete evaluation of the SS as an effective intervention. Being in a natural setting instead of in their homes would have also decreased the threat to external validity. Recommendations for Future Research There are numerous recommendations for futu re research. Because there is so little research that involves adoles cents with AS, replication of those studies that do exist would help address this knowledge gap. It would be beneficial to assess the effectiveness of the SS intervention if the operational definition was written to include the quality of response, not just the mechanism of the response. However, the SS w ould have to be rewritten to include that specific instruction. Female participants should also be incl uded, and instituting th is intervention in a natural setting should be eval uated. Generalization probes and longer maintenance probes would also be beneficial in demonstrating a cause and effe ct relationship. Although this study evaluated the effectiveness of the SS on adolescents with AS, there are many adults with AS who have been living with impaired soci al skills most of th eir lives. Finding out which interventions will make a difference in their social relationshi ps is important to help these adults who struggle to fit into todayÂ’s society. Sinc e these adults with AS have not had the advantage of early diagnoses a nd early interventions, it becomes imperative to find interventions that work for this population. Assessing the influence of a si bling who is also using th e SS to target socially inappropriate behaviors is another research pos sibility. Since Charlie was so forceful with

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107 his SS, one wonders if he could have that same effect on his brothers if he was reading a different SS that targeted a di fferent behavior. If Charlie wa s the only one to read a SS, could he effectively cause a change in his br othersÂ’ behaviors all by himself, through role playing and modeling alone? What about the e ffect of the paint color sample? Would it also have benefited his brothers if he had shared this prompt with them? BenÂ’s SS targeted two separate behavi ors, interrupting a nd turn-taking. In reviewing the literature , this is the only study during whic h two behaviors were targeted and changed by one SS. This unexpected disc overy needs to be explored further to determine if it can be replicated in other adol escents with AS, and to assess if it can be replicated in indivi duals who are not so high-functioning. Implications for Clinical Practice Nurses have long been an active force in the treatment of diseases and disorders that affect physical and mental health. As we have progressed as a profession, health promotion and wellness have become the hear t of professional nursing. Part of health promotion must be the attainment of so cial confidence, which encourages the development of productive relationships and healthy self-esteems. The focus on social health has now become a part of the functi onal assessment that we as nurses evaluate when we are detailing the nursi ng history of our clients. Fo r those individuals with AS, poor social health can lead to impaired self -worth, and possibly withdrawal from society at large (Bellini, 2002). For so me of those individuals, this life of self-imposed separation from society is tolerable, but for others, it is a descent into depr ession, substance abuse, or self-abuse (Ghazuiddin, Ghazuiddin, & Greden, 2002; Ghazuiddin, King, Naylor, & Ghazuiddin, 2000; Ghaziuddin, Weidmer-Mikha il, & Ghaziuddin, 1998; Hardan & Sahl, 1999).

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108 Since AS is a relatively new di agnostic category within the International Classification of Diseases, 10th edition (World Health Organization, 1993), and the Diagnostic and Statistical M anual of Mental Health, 4th edition (American Psychiatric Association, 1994), many of the adolescents with AS have only been diagnosed within the last decade. Interventions that are initiate d early in the life of a child with an AS are much more effective than those that are st arted later (Koegel & Koegel, 1995; Potter & Whittaker, 2001), so adolescents with AS are already fighting the odds of obtaining some normalcy in their life. In this study, the part icipants were all in early adolescence, and diagnosed after they started elementary school. None of them had ever had any individualized social skill instructions within the public school system, even though teachers had told each set of parents that their children had trouble “fitting in”. It would then be logical to conclude that instituting this intervention at an earlier age would prove beneficial (Howlin, 2003; Howlin, G oode, Hutton, & Rutter, 2004; Hume, Bellini, & Pratt, 2005), thus allowing the child extra time to internalize the lessons of the SS and to practice the appropriate be haviors until they are habitual and second nature. Within the clinical practices of pediatrics, fam ily practice, neurology, and psychiatry, medical providers such as nurse practitione rs have the opportunity to intervene at the earliest possibl e time. They must be more aw are of the characteristics of AS and the need for timely diagnoses, and be informed of the interventions that have been proven beneficial to this population. With early diagnoses come early interventions, and a hope for improved social health. Nurses must be able to communicate on a pe rsonal level with their clients so that an effective and trusting prof essional relationship can be developed for the “assessment

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109 of functional abilities …of individuals…and the purposeful planning of goal directed activities” (King, 1981, p. 8). Fo r those nurses who are employe d in hospitals, clinics, and other medical facilities, awareness of AS must incl ude the characteristics and understanding of the pathology so that successful communica tion can be facilitated and client education can be initiated. Being pro active and instrumental in client education with those individuals who ar e demonstrating poor social h ealth habits should be as important as being involved with those indivi duals who have significa nt risk factors for physical, mental, and emotional diseases and disorders. For nurses involved in schools, commun ity-based disciplines, and child-care programs, it is critical to have knowledge about interv entions that facilitate communication between the child and the care giver and the child a nd their peers, to ensure that productive interaction is achi eved. If accepted as a friend by their peers, children with AS have the opportunity to learn by watching their friends’ typical behaviors and by modeling what they have observed. Therefore, being informed about what interventions work best for the characteri stics that are seen and being part of a team of professionals who work to initiate these interventions is just one more role for the professional nurse. In conclusion, nursing must avail itself to the promotion of social health as much as the profession has promoted the preventi on of illness, the tr eatment of disease processes, the elimination of risk factors for physical inst ability, and the prevention and treatment of those mental health disorders th at preclude a healthy lifestyle. Nursing has been at the wayside as interventions for social health have been developed and assessed by the professions of psychology and education. By broadening the definition of a

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110 healthy lifestyle and mental stability, nursi ng professionals can become involved in the assessment of the needs of i ndividuals with AS, and can be a part of the process to formulate, implement, and evaluate interven tions within the fram ework of the nursing process.

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111 APPENDIX A INFORMED CONSENT IRB# ______ Informed Consent to Pa rticipate in Research and Authorization for Collection, Use, and Disclosure of Protected Health Information If you are a parent , as you read the information in this Consent Form, you should put yourself in your child's place to decide whethe r or not to allow your child to take part in this study. Therefore, for the rest of th e form, the word "you" refers to your child. If you are a child, adolescent, or adult reading this form, the word "you" refers to you. You are being asked to take part in a re search study. This form provides you with information about the study and seeks your authorization for the collection, use, and disclosure of your protected health inform ation necessary for the study. The Principal Investigator (the person in charge of this re search) or a representative of the Principal Investigator will also describe this study to you and answer all of your questions. Your participation is entirely voluntary. Before you de cide whether or not to take part, read the information below and ask questions a bout anything you do not understand. If you choose not to participate in this study you will not be penalized or lose any benefits to which you would otherwise be entitled. 1. Name of Participant ("Study Subject") Insert na me of participant here______________

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112 2. Title of Research Study Using Social Stories to Teach Socially A cceptable Behaviors: Are They Effective for Adolescents with Asperger’s Syndrome? 3. Principal Investigator and Telephone Number(s) Kathleen Washburn, MSN, ARNP – Home (904) 259-8848 Office (904) 256-7600 4. Source of Funding or Other Material Support University of Florida 5. What is the purpose of this research study? The purpose of this study is to see if so cial stories will help adolescents with Asperger’s syndrome learn so cially acceptable behaviors. 6. What will be done if you ta ke part in this research study? The Principal Investigator will explain this resear ch study to you an d your parents. A consent form will be re ad with you, and you will be allowed to ask questions. You and your parents will sign this form if you decide you want to be a part of this research study. The Principal Investigator will talk w ith your parents, and one of them will be asked to fill out three questionnaires that w ill take less than 20 minutes. One of these questionnaires will tell us about how well you make friends, and one will help us identify behaviors that may not be accepted by your school-mates or friends. The last one will tell us what your parents think a bout the way you act in social situations. After we look at the answers, we will identi fy behaviors that may not be accepted by your school-mates or friends. You will meet with the Principal Investigat or three times a week for about 30 minutes. At first, you and the Principal Investigator will sit at a tabl e in your home, and just talk for 15-minutes about your day, your feelings , or anything else a bout which you want to talk. You will always see a vi deo-camera taping all of th e conversations, but it will be out of your way. Soon a social story will be written for you, and we will read this story every day. The Principal Investigator will as k you some questions a bout the story. Once you have answered the questions about th e story, then you and the Principal Investigator will get to talk again for 15-minutes, but this ti me you will try to do what the story tells you to do. If you forget to do what the story tells you to do, the Principal Investigator will point to a card on the table that will have words printed on it, to

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113 remind you what the story te lls you to do. After you get to know the story well, the Principal Investigator will only read the story and show you the cards some of the times. After about three mo nths, you will no longer be talking with the Principal Investigator. The research stud y will be finished and you w ill get to keep the story and the cards. To see how you and your family do over time , the Principal Investigator will then come to your home after one month and vide otape you the same way as before. At the end of the study, your parents will be aske d to fill out one more questionnaire, regarding what they thought a bout the social stories. This is a short questionnaire and should only take about 10 minutes to complete. If you have any questions now or at any time during the study, you may contact the Principal Investigator lis ted in #3 of this form. 7. If you choose to participate in this study, how long will yo u be expected to participate in the research? Total participation is expected to be 3 4 mo nths (60 90 days of treatment, 30 days of follow-up). 8. How many people are expected to participate in this research? There may be up to 24 persons enrolled in his study or asked to participate. 9. What are the possible discomforts and risks? There are no expected health risks or di scomforts anticipated during this research. Participation in more than one research st udy or project may furthe r increase the risks to you. Please inform the Principal Investigat or (listed in #3 of this consent form) or the person reviewing this consent with you before enrolling in this or any other research study or project. Throughout the study, the researchers will notify you of new in formation that may become available and might affect your decision to remain in the study. If you wish to discuss the information a bove or any discomforts you may experience, you may ask questions now or call the Principa l Investigator or contact person listed on the front page of this form.

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114 10a. What are the possib le benefits to you? You may or may not personally benefit from participating in this study. 10b. What are the possible benefits to others? It is possible that there will be no benefits. However, the information obtained from this study may help improve the treatment of AspergerÂ’s syndrome in the future. 11. If you choose to take part in this research study, will it cost you anything? There is no cost to you or your family. Cost s for routine medical care procedures that are not being done only for the study will be charged to you or your insurance. 12. Will you receive compensation for taking part in this research study? You will not receive any monetary comp ensation for participating in this investigation. 13. What if you are injured because of the study? If you experience an injury that is dire ctly caused by this study, only professional consultant care that you receive at the Univer sity of Florida Health Science Center will be provided without charge. Ho wever, hospital expenses will ha ve to be paid by you or your insurance provider. No other compensation is offered. Please contact the Principal Investigator listed in #3 of this form if you experience an injury or have any questions about any discomforts that you experien ce while participating in this study. 14. What other options or treatments are availa ble if you do not want to be in this study? Participation in this study is entirely vol untary. You are free to refuse to be in the study, and your refusal will not influence curren t or future health care you receive at this institution. 15a. Can you withdraw from this research study? You are free to withdraw your consent and to st op participating in this research study at any time. If you do withdraw your consent, th ere will be no penalty, and you will not lose any benefits to which you are entitled.

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115 If you decide to withdraw y our consent to participate in this research study for any reason, you should contact Kath leen Washburn at (904) 259-8848. If you have any questions regarding your ri ghts as a research su bject, you may phone the Institutional Review Board (IR B) office at (352) 846-1494. 15b. If you withdraw, can information abou t you still be used and/or collected? If you withdraw from this research study, all information collected up until the time that you withdraw from the study will be used, but no further information will be collected. 15c. Can the Principal Investigator wi thdraw you from this research study? You may be withdrawn from the study w ithout your consent for the following reasons: You are unable to be videotaped due to scheduling difficulties or if you become ill and cannot participate. 16. If you agree to participate in this re search study, the Prin cipal Investigator will create, collect, and use private information about you and your health. Once this information is collected, how w ill it be kept secret (confide ntial) in order to protect your privacy? Information collected about y ou and your health (called prot ected health information) will be stored in locked fili ng cabinets or in comp uters with security passwords. Only certain people have the legal right to revi ew these research re cords, and they will protect the secrecy (confidentiality) of these records as much as the law allows. These people include the researchers fo r this study, certain University of Florida officials, the hospital or clinic (if any) involved in this research, and the Institutional Review Board (IRB; an IRB is a group of people who are re sponsible for looking af ter the rights and welfare of people taking part in research). Otherwise, your resear ch records will not be released without your permission unle ss required by law or a court order. If you participate in this research study, th e researchers will collect , use, and share your protected health information with others. Items 17 to 26 below describe how this information will be colle cted, used, and shared.

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116 17. If you agree to participate in this research study, what protected health information about you may be collect ed, used, and shared with others? Your protected health inform ation may be collected, used, and shared with others to determine if you can participate in the study, and then as part of your participation in the study. This information can be gathered from you or your past, current, or future health records, from procedures such as physical examinations, or from other procedures or tests. This in formation will be created by r eceiving study treatments or participating in study procedures, or from your study visits and telephone calls. More specifically, the following info rmation may be collected, used, and shared with others: Information about your general health condition and medication history (Complete present and past medical history as provided by you to determine eligibility criteria listed in the protocol) Demographic Information, which includes name, age, and school grade level. Data obtained from videotaped sessions obtained in your home or school during the study. Questionnaires and surveys Records about medications or drugs If you agree to be in this research study, it is possible that some of the information collected might be copied into a "limited da ta set" to be used for other research purposes. If so, the limited data set ma y only include information that does not directly identify you. For ex ample, the limited data set cannot include your name, address, telephone number, social secu rity number, or any other photographs, numbers, codes, or so forth that link you to the information in the limited data set. If used, limited data sets have legal agr eements to protect your identity and confidentiality and privacy. 18. For what study-related purposes will your protected health information be collected, used, and sh ared with others? Your protected health inform ation may be collected, used, and shared with others to make sure you can participate in the re search, through your participation in the research, and to evaluate the results of th e research study. More specifically, your protected health information may be collect ed, used, and shared with others for the following study-related purpose(s): to determine the effectiveness of social stories in improving social behaviors of adolescents with AspergerÂ’s syndrome 19. Who will be allowed to coll ect, use, and share your protected health information? Your protected health inform ation may be collected, used, and shared with others by: the study Principal Investigator, Kathleen Washburn, and her staff

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117 other professionals at the University of Florida or Shands Ho spital that provide study-related treatment or procedures the University of Florida Institutional Review Board The Principal Investigato rÂ’s dissertation committee 20. Once collected or used, with whom may your protected health information be shared? Your protected health information may be shared with: The study sponsors, University of Florida United States and foreign governmental agencies who are responsible for overseeing research, such as the Food and Drug Administration, the Department of Health and Human Servi ces, and the Office of Human Research Protections Government agencies wh o are responsible for ove rseeing public health concerns such as the Centers for Diseas e Control and Federal, State and local health departments 21. If you agree to participate in this rese arch, how long will you r protected health information be used and shared with others? Your protected health information will be collected until the end of the study. This information can be used and disclosed for 2 years, since it will be stored for that period of time in a secure database. 22. Why are you being asked to allow the collection, use, and sharing of your protected health information? Under a new Federal Law, researchers cannot collect, use, or share with others any of your protected health informa tion for research unless you a llow them to by signing this consent and authorization. 23. Are you required to sign this cons ent and authorization and allow the researchers to collect, use, and share with others your protected health information? No, and your refusal to sign will not affect your treatment , payment, enrollment, or eligibility for any benefits out side this research study. However, you cannot participate in this research unless you allow the coll ection, use and sharing of your protected health information by signing this consent/authorization.

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118 24. Can you review or co py your protected health inform ation that has been collected, used, or shared with others under this authorization? You have the right to review and copy your protected health information. However, you will not be allowed to do so until after the study is finished. 25. Is there a risk that your protected health information could be given to others beyond your authorization? Yes. There is a risk that information recei ved by authorized persons could be given to others beyond your authorizati on and not covered by the law. 26. Can you revoke (cancel) your authorizatio n for collection, use, and sharing with others of your protected health information? Yes. You can revoke your authorization at any time before, during, or after your participation in the research. If you revoke, no new information will be collected about you. However, information that was already co llected may still be used and shared with others if the researchers have relied on it to complete and protect the validity of the research. You can revoke your authorization by giving a written request with your signature on it to the Principal Investigator. 27. How will the researcher benefit from your being in this study? In general, presenting research results helps the career of a scien tist. Therefore, the Principal Investigator may benefit if the results of this study are presented at scientific meetings or in scientific journals. If the results of this research are p ublished or presented at scientific meetings, your identity will not be disclosed.

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119 28. Signatures As a representative of this study, I have expl ained to the participan t or the participant's legally authorized representative the purpose, the procedures, the possible benefits, and the risks of this research study; the alternatives to being in th e study; and how privacy will be protected. ____________________ ____________________ ______ _______ ______________ Signature of Person Obtaining Co nsent Date Consenting Adults You (and/or the participant) have been inform ed about this studyÂ’s purpose, procedures, possible benefits, and risks; the alternatives to being in the study; and how your (or the participantÂ’s) privacy will be protected. You have received a copy of this Informed Consent Form. You have been given the opportunity to ask questions be fore you sign, and you have been told that you can ask other questions at any time. Adult Consenting for Self. By signing this form, you voluntarily agree to participate in this study. By signing this form, you are not waiving any of your legal rights. ____________________ ____________________ ______ _______ ______________ Signature of Adult Consenting for Se lf Date Parent/Adult Legally Re presenting the Subject. By signing this fo rm, you voluntarily give your permission for the person named below to participate in this study. You are not waiving any legal rights for yourself or the person you are legally representing. After your signature, please print your name and your relationship to the subject. ____________________ ____________________ ______ _______ ______________ Signature of Parent/Legal Representa tive Date ____________________ ____________________ _________________ ______________ Print: Name of Legal Re presentative of and Rela tionship to Participant

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120 Participants Who Cannot Co nsent But Can Read and/or Understand about the Study Although legally you cannot "consent" to be in this study, we need to know if you want to take part. If you decide to take part in th is study, and your parent or the person legally responsible for you gives permission, you both need to sign. Your signing below means that you agree to take part (a ssent). The signature of your parent/legal representative above means he or she gives permission (consent) for you to take part. _________________ _________________ ___________ ____ ______________ Assent Signature of Participant Date

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121 Consent to be Videotaped and to Di fferent Uses of the Videotape(s) With your permission, you will be videotaped during this research. Your name or personal information will not be recorded on the videotape, and confidentiality will be strictly maintained. When these videotapes are shown, however, others may be able to recognize you. The Principal Investigator of this study, Kathleen Washburn, or her successor, will keep the videotape(s) in a locked cabinet. These videotapes will be shown under her direction to students, researchers, doctors, or other professionals and persons. Please sign one of the following statements that indi cates under what conditions Kathleen Washburn has your permission to use the videotape. I give my permission to be videotaped so lely for this resear ch project under the conditions described. _______________________________________________Signature _______________________________________________Date I give my permission to be videotaped for th is research project, as described in the Informed Consent Form, and for the purposes of education at the University of Florida Health Science Center. _______________________________________________Signature _______________________________________________Date I give my permission to be videotaped for th is research project, as described in the Informed Consent Form; for the purposes of edu cation at the University of Florida Health Science Center; and for presentations at sc ientific meetings outside the University. ________________________________________________Signature ________________________________________________Date

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122 APPENDIX B CAREGIVER QUESTIONNAIRE FOR A SSESSMENT OF SOCIAL BEHAVIORS Participant # _________________ Date __________________ 1) Does this adolescent have difficulty establ ishing social relationships with his/her peers? If you answered yes the question #1, please answer the following : 2) What specifically are the difficulties you have seen? 3) What behaviors do you think might interf ere with his/her establishing social relationships with peers? 4) How often do you see these behaviors? 5) In what situations do you see these behaviors?

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123 APPENDIX C DATA COLLECTION SHEET

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124DATA COLLECTION SHEET Participant Name___________________________ Date __________________ 10 SECONDS 20 SECONDS 30 SECONDS 40 SECONDS 50 SECONDS 60 SECONDS 1 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 2 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 3 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 4 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 5 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 6 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 7 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 8 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 9 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 10 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 11 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 12 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 13 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 14 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR 15 T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T I EP TP VP RR T = TURN TAKING I= INTERRUPTING EP= VISUAL PROMPT TP=TACTILE PROMPT VP=VERBAL PROMPT RR= REREAD SS

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125 APPENDIX D TREATMENT INTEGRITY Participant # __________________________ Date __________________ Sequence of events YesNo The session takes place in a quiet, isolated office where there is little chance of being interrupted. The session takes place at the same time of day. The PI sets the camcorder up before the participant enters the room The PI and the participant are seated across from each other at a table, within a comfortable conversation zone. The social story is read aloud by the participant. The comprehension questions are asked by the PI, and answered by the participant with 100% accuracy be fore the conversation takes place. The participant reviews the social story silently for one to two minutes after answering the comprehension questions correctly. There is a 15-minute conversation, duri ng which the targeted behaviors are videotaped wit hout interruption. During the intervention phase, the cue words are used correctly (tiered prompting with specific periods). The PI dismantles the camcorder afte r the participant leaves the room. Treatment integrity maintained? Yes No Corrections to be made: _______________________________________________________________________

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126 APPENDIX E SOCIAL VALIDITY QUESTIONNAIRE Please read each item carefully and circle th e number that best describes your response. Use the following scale to determine how each statement reflects your opinion. 1 2 3 4 5 Not at all Just a little Somewhat Quite a bit Exactly 1. I believe Social Stories are useful for my child . 1 2 3 4 5 2. This intervention would be approp riate for a variety of situations . 1 2 3 4 5 3. This intervention would produce a lasti ng improvement in my childÂ’s functioning. 1 2 3 4 5 4. I am likely to use this intervention again . 1 2 3 4 5 5. I would suggest this intervention to others . 1 2 3 4 5 Please write any comments that you have about the use of Social Stories. Thank you for your time and part icipation in this project.

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127 APPENDIX F ADAMÂ’S SOCIAL STORY INTERRUPTING Page 1 When I talk to people, I sometimes interrupt them before they are finished saying what they have to say. I tend to jump in when they take a breath, and start discussing something I want to talk about. When I keep interrupting and inte rrupting, people look at me funny, and usually walk away before I am fi nished talking. This makes me feel very sad. Page 2 When someone else is talking and I interrupt, they will think it is r ude and that is why they do not want to talk with me any longe r. When I interrupt someone, I am really telling that person that what th ey are saying is of no interest to me. It is not the way to make and keep a friend. Page 3 I feel badly when someone interrupts me when I am speaking, and I sometimes get mad about it. I guess that is how the other people feel when I interrupt them while they are talking. Page 4 When I am talking with people, it is very im portant to make sure everyone participating in the conversation gets to talk. Everyone lik es to be heard, especially me, but I must learn to wait my turn. Being able to talk without being interrupt ed makes people feel

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128 important, and everyone likes that . If I do not interrupt them, they will continue to talk with me and I may make a new friend. Page 5 What can I do to keep myself from interrupting someone while they are talking? Before I start talking, I must remind my self that I do not like to be interrupted, and neither does anyone else. That will be the most important thing to remember. Page 6 It is important to listen to what the ot her person is saying. By listening to what is being said, I can follow what is being said, and remind myself that the other person wants to finish their story. I need to be silent until they are through talking. Page 7 What can I do to remind myself to let the other person finish? I can hold my tongue in between my teeth with my lips closed, and that will remind me not to speak too soon. I can hold my hands together and only talk if th ey are unclasped. Since I tend to talk with my hands, this will remind me not to interrupt. Page 8 How will I know when I can talk? The other pe rson will stop talking and look at me so I can respond. I will have to be listening very closely and pay attention to what the other person is saying so I will know what to say. I will keep my comments short enough so I do not talk too much. If I ta lk too much the other person may end up interrupting me. When I have finished talking, I will look at the other person and wait for them to say something. And I will wait and lis ten so I will not interrupt.

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129 APPENDIX G BEN’S SOCIAL STORY – TURN TAKING Page 1 When I am in the same environment with another person, I may want to talk with the other person, or they may want to talk with me. But a conversation has to have two sides. Someone talks and someone listens. One person doing all of the talking does not make a conversation. A conversation only happens if both people are allowed to talk, and one responds to what the other person is saying. Page 2 To have a conversation with this other pers on, I will have to talk with them over and over, and let them know I am interested in wh at they have to say. When I do not respond appropriately to someone who is talking to me , they may think that I am not listening to what they are saying or that I do not care enough to carry on a conversation with them. I think that would upset the other person, and th ey would not want to talk with me any longer. Listening and responding appropriately will help me develop friendships. Page 3 When someone wants to talk with me, I have to do three things to keep the conversation going. The first thing I have to do is listen carefully. I need to ask myself “what are they saying?” I need to ask questi ons if I do not understand what they are talking about. I can ask them, “what does that mean’, or “how does that happen”, or “tell me more about that, because I am not familiar with that subject”. This way I will get an explanation before the

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130 conversation gets too involved. Once I understa nd what the other person is saying, I can relax, listen, and respond. Page 4 The second thing I need to do is respond appropr iately after they have finished talking. If I want the conversation to cont inue, then I have to make a comment about what was just said. I can ask a question about the subject, or ask them to explain one small part of their story in more detail. Page 5 I can say, a) tell me more about this or b) when did this happen, or c) has this ever happened before, or d) why do you think this is happening or e) what is that, or f) What does that mean, or g) what do you mean by that?. Page 6 I can keep the conversation going by asking questions that use the following words to start the question: how, when, where, why, w ho, and what. I can say any of these phrases and the other person will answer me. Th en I can listen again and respond again. Page 7 Some of the phrases I can say are 1) what ha ppened next, or 2) how did that happened, or 3) what did you do then, or 4) what did they say, or 5) why did that happen, or 6) where did that happen, or 7) who di d that, or 8) how is that done , and 9) how do you feel about that? The other person will like that I have listened and asked questions. They will know that I am interested in them and what they have to say. They will probably be happy to stay and talk with me.

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131 Page 8 The last thing that I have to do to keep a conversation going is to respond as soon as the other person stops talking. Af ter they have stopped speaki ng, I should be ready with a comment or a question that is about the subjec t of the conversation. I can only be ready to respond if I have been listening carefully and understanding what is being said. I should take my time and look at the person when I make my comments or ask my question. I should speak clearly and loud enough so they can hear me. I should then wait and let them answer my question or say someth ing back to me about my comments. Page 9 It is important that I do not interrupt while they are talking, but to wait until they are finished speaking. If I interrupt someone while they are talking, th ey may not stay and talk with me because they will think I do not want to listen to what they are saying. Page 10 I like to talk to people and I know I can keep a conversati on going by paying attention to what is said and understanding the meaning of what is said. If I do not understand, I will ask the other person to explain it to me. I w ill then respond with an appropriate comment or question. I will make my comments or ask my questions as soon as they have stopped talking. I will look at the person, I will speak clearly, and I will talk so they can hear me. I will not interrupt while they are talking, but will take my turn.

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132 APPENDIX H CHARLIE’S SOCIAL STORY TURN TAKING Page 1 When I am in the same environment with my brothers or a friend, I may want to talk with them, or they may want to talk with me. But a conversation has to have at least two sides. Someone talks and someone listens. One person doing all of the talking does not make a conversation. A conversation only happens if all the people are allowed to talk, and everyone responds to what is being said. Page 2 To have a conversation with other people, I will have to respond to them over and over, and let them know I am interested in what they have to say. When I do not respond appropriately to someone who is talking to me , they may think that I am not listening to what they are saying or that I do not care enough to carry on a conversation with them. I think that would upset the other person, and th ey would not want to talk with me any longer. Listening and responding appropriately will help me develop friendships and will help my brothers and I lear n to listen to the others. Page 3 When someone wants to talk with me, I have to do three things to keep the conversation going. The first thing I have to do is listen carefully. I need to ask myself “what are they saying?” I need to ask questi ons if I do not understand what they are talking about. I can ask them, “what does that mean’, or “how does that happen”, or “tell me more about that, because I am not familiar with that subject”. That way I will get an explanation before the

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133 conversation gets too involved. Once I understa nd what the other person is saying, I can relax, listen, and respond. Page 4 The second thing I need to do is respond appropr iately after they have finished talking. If I want the conversation to cont inue, then I have to make a comment about what was just said. I can ask a question about the subject, or ask them to explain one small part of their story in more detail. Page 5 I can say, a) tell me more about this or b) when did this happen, or c) has this ever happened before, or d) why do you think this is happening or e) what is that, or f) What does that mean, or g) what do you mean by that?. Page 6 I can keep the conversation going by asking questions that use the following words to start the questions: how, when, where, w hy, who, and what. I can say any of these phrases and the other person will answer me. Then I can listen again and respond again. Page 7 Some of the phrases I can say are 1) what ha ppened next, or 2) how did that happened, or 3) what did you do then, or 4) what did they say, or 5) why did that happen, or 6) where did that happen, or 7) who di d that, or 8) how is that done , and 9) how do you feel about that? The other person will like that I have listened and asked questions. They will know that I am interested in them and what they have to say. They will probably be happy to stay and talk with me.

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134 Page 8 The last thing that I have to do to keep a conversation going is to respond as soon as the other person stops talking. Af ter they have stopped speaki ng, I should be ready with a comment or a question that is about the subjec t of the conversation. I can only be ready to respond if I have been listening carefully and understanding what is being said. I should take my time and look at the person when I make my comments or ask my question. I should speak clearly and loud enough so they can hear me. I should then wait and let them answer my question or say someth ing back to me about my comments. Page 9 I like to talk to all people, especially my brothers, and I know I can keep a conversation going by paying attention to what is said and understanding the meaning of what is said. If I do not understand, I will ask the other person to explain it to me. I will then respond with an appropriate comment or question. I will make my comments or ask my questions as soon as they have stopped talking. I will look at the person in the face, I will speak clearly, and I will talk so they can hear me. I will take my turn, and let them have theirs.

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135 APPENDIX I DANNY’S SOCIAL STORYINTERRUPTING Page 1 When I talk to my family, I sometimes interrupt them before they are finished saying what they have to say. I tend to jump in wh en they take a breath, and start discussing something I want to talk about. When I k eep interrupting and interrupting, my mom and my brothers look at me funny, and usually walk away before I am finished talking. This makes me so mad at me, and I understand why th ey walk away – why talk to me if all I ever do is try to talk louder and longer than them? Page 2 When someone else is talking and I interrupt, they probably th ink it is rude and that is why they do not want to talk with me any l onger. When I interrupt them, they may think I am not interested in what they have to sa y or what their opinion may be. I am really telling that person that what th ey are saying is of no interest to me. It is not the way to make my friends and family happy. Page 3 I feel badly when someone interrupts me when I am speaking, and I sometimes get mad about it. I guess that is how the other people feel when I interrupt them while they are talking. If I continue to make everyone mad by never letting them finish their sentences, then I will be lonely when they refuse to talk to me any more.

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136 Page 4 When I am talking with people, it is very im portant to make sure everyone participating in the conversation gets to talk. Everyone lik es to be heard, especially me, but I must learn to wait my turn. Being able to talk without being interrupt ed makes people feel important, and everyone likes that . If I do not interrupt them, they will continue to talk with me and I may make a new friend. Page 5 What can I do to keep myself from interrupting someone while they are talking? Before I start talking, I must remind my self that I do not like to be interrupted, and neither does anyone else. That will be the most important thing to remember. Page 6 It is important to listen to what the other person is saying. By liste ning to what is being said, I can follow what is being said, and re mind myself that the other person wants to finish their story. I need to be silent until they are through talking. Page 7 What can I do to remind myself to let the ot her person finish? I can hold my tongue in between my teeth with my lips closed, and that will remind me not to speak too soon. I can hold my hands together and only talk if th ey are unclasped. Since I tend to talk with my hands, this will remind me not to interrupt. Page 8 How will I know when I can talk? The other pe rson will stop talking and look at me so I can respond. I will have to be listening very closely and pay attention to what the other person is saying so I will know what to say. I will keep my comments short enough so I do not talk too much. If I ta lk too much the other person may end up interrupting me.

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137 When I have finished talking, I will look at the other person and wait for them to say something. And I will wait and lis ten so I will not interrupt.

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138 APPENDIX J EDDIE’S SOCIAL STORY – PERSEVERATION Page 1 I like to talk about taxidermy. I like everyt hing about taxidermy. But sometimes I talk about taxidermy too much, and not everyone wants to hear about it. Taxidermy makes some people uncomfortable and if I am always talking about it, then they will not want to talk to me. I want people to talk with me and feel comfortable around me, so I need to stop and think about what I can talk about before I start talk ing about taxidermy. Page 2 When people are around me, I know there are a lot of subjects we can talk about. I have to listen to people very carefully when they talk so I will know what things they are interested in. Some people like to talk about sports, so I could ask them what sport events they like to watch. I could ask them who thei r favorite teams are. I could ask them about the team’s season. I will not talk about the sp ort of hunting because then I start talking about taxidermy. Page 3 Some people like to talk about their hobbies. I can ask them what kinds of things they like to do in their free time. I would not men tion that I like to work in my father’s taxidermy shop unless they asked. I would ask th em if they like to go to the lake, or if they liked to go camping. We c ould talk about their favorite ti me of year to go camping. I could ask them when they started liking th eir favorite hobby. I would ask them to tell me all about it.

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139 Page 4 Most people like to talk about their families. I could ask about their brothers and sisters and I could tell them about my big family. I could tell them what it is like to be a triplet. I could ask where they lived when they were younger, and what they did to have fun outside. If the person is a mom or dad, I could ask them about their children.\ Page 5 My friends who are my age get really upset when I talk about taxidermy. I will not talk about taxidermy around them unless they ask. Bu t what kind of things can I talk about with my friends? I know many of them like music. I could ask them who their favorite bands are, what songs they like best, what con certs they have been t o, and if they like the music loud. We could sing some of the songs toge ther or talk about what it would be like to be a rock star. My friends also like to talk about school. I am ho me-schooled so I like to listen about what really goes on in public schools. I could practice my listening skills. Page 6 Some people might ask me about my dad’s ta xidermy business. But they do not want to hear everything I know about taxidermy. I coul d tell them my dad and Uncle Jack run the shop. I could tell them that Uncle Jack is there almost every day and my dad is there when he is not away on business. Page 7 I can answer their questions about taxiderm y, but will only talk for one minute. Then I will stop. I will not mention how it is done unl ess they ask me directly because not everyone wants to know how the skin is preserved or how we clean the bodies. I can tell them the “nice” parts of taxidermy, such as how we sell them, how we decide how to pose them, and what kinds of mounts we make for the figures.

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140 Page 8 I can always ask the other people what they want to talk about. I can tell them that I talk too much about taxidermy, but that I can talk to them about anything else they want to talk about, too. I am an intere sting teenager and I like to talk to ever yone. If I want people to talk with me and like me, then I will on ly discuss taxidermy with my dad, my mom, my brothers, and my uncle. I will try talking about sports, hobbies, music, or school, but not taxidermy.

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141 LIST OF REFERENCES Achenbach, T. M. (1991). Manual for the revised child be havior checklist /6-18 and the 1991 profile . Burlington, VT: University of Ve rmont Department of Psychiatry. Agosta, E., Graetz, J., Mastropieri, M ., & Scruggs, T. (2004). Teacher-researcher partnerships to improve social behavior through so cial stories. Intervention in School and Clinic, 39 , 276-287. American Psychiatri c Association (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. Baker, M. (2000). Incorporating the thematic ritualistic behavi ors of children with autism into games [Electronic version]. Journal of Positive Behav ior Interventions, 2 (2), 66-84. Baltaxe, C., & Simmons, J. (1992). A comparis on of language issues in high-functioning autism and related disorders with onset in childhood and adolescence. In E. Schopler & G. Mesibov (Eds), High-functioning individuals with autism (pp. 201225). New York: Plenum Press. Barker, C., Pistrang, N., & Elliot, R. (2002). Research methods in clinical psychology: An introduction for student practitioners . Hoboken, NJ: J. Wiley. Barnhill, G., Cook, K., & Tebbenkamp, K. (200 2). The effectiveness of social skills intervention targeting nonverbal communi cation for adolescents with Asperger syndrome and related pervasive developmental delays. Focus on Autism and other Developmental Delay, 17, 112-118. Barry, L., & Burlew, S. (2004). Using social stories to teach choice and play skills to children with autism [Electronic version]. Focus on Autism and other Developmental Disabilities, 19 (1), 45-51. Barry, L., & Singer, G. (2001). A family in cris is: Replacing the aggre ssive behavior of a child with autism toward an infant sibling [Electronic version]. Journal of Positive Behavior Interventions, 3 (1), 28-38. Bauminger, N. (2002). The facilitation of social-emotional understanding and social interaction in high-func tioning children with auti sm: Intervention outcomes [Electronic version]. Journal of Autism and Developmental Disorders, 32 , 283-298.

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142 Bellini, S. (2002). Social skills deficit and anxiety in high-functioning adolescents with autistic spectrum disorders. Focus on Autism and other D evelopmental Disabilities, 19, 78-86. Bishop, D. (1989). Autism, Asperger syndr ome, and semantic-pragmatic disorder: Where are the boundaries? British Journal of Disorders of Communication, 24 , 107-121. Bernard-Opitz, V., Sriram, N., & Nakhoda-Sap uan, S. (2001). Enhancing social problem solving in children with autism and nor mal children through computer-assisted instruction [Electronic version]. Journal of Autism and Developmental Disorders, 31 ,377-384. Betancur, C., Leboyer, M., & Gi llberg, C. (2002). Increased rate of twins among affected sibling pairs with autism. American Journal of Human Genetics, 70 , 1381-1383. Bishop, J. (2003). The internet for educati ng individuals with social impairments [Electronic version]. Journal of Computer Assisted Learning, 19 , 546-556. Bledsoe, R., Myles, B., & Simpson, R. (2003) . Use of a social story intervention to improve mealtime skills of an adolescent with Asperger syndrome [Electronic version]. Autism, 7 , 289-295. Brownell, M. (2002). Musically adapted social stories to modify behaviors in students with autism: Four case studies. The Journal of Music Therapy, 39 (2), 117-144. Campbell, J. (2005). Diagnostic assessment of AspergerÂ’s di sorder: A review of five third-party rating scales. Journal of Autism and Developmental Disorders, 35, 2535. Charlop-Christy, M., & Daneshva r, S. (2003). Using video m odeling to teach perspective taking to children with au tism [Electronic version]. Journal of Positive Behavior Interventions, 5 (1), 12-21. Charlop-Christy, M., & Kelson, S. (2003). Teac hing children with autism conversational speech using a cue card/written script program. Education and Treatment of Children, 26( 2), 108-127. Cobb, S., Beardon, L., Eastgate, R., Glover, T., Kerr, S., Neale, H., et al. (2002). Applied virtual environments to support learning of social interaction sk ills in users with AspergerÂ’s syndrome. Digital Creativity, 13 (1), 11-22. Cohen, D., Pichard, N., Tordjman, S., Bauma nn, C., Burglen, L., Excoffier, E., et al. (2005). Specific genetic disorders and autis m: Clinical contribution towards their identification. Journal of Autism and Developmental Disorders, 35, 103-116 .

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143 Croen, L., Grether, J., & Selvin, S. (2002) . Descriptive epidemiology of autism in a California population: Who is at risk? Journal of Autism and Developmental Disorders, 32 , 217-224. Cullain, R. (2000). The effect of social storie s on anxiety levels and excessive behavioral expressions of elementary school aged children with autism. Dissertation Abstracts International , 62 (07), 2383. (UMI No. 3019561) DÂ’Ateno, P., Mangiapanello, K., & Taylor, B. (2003). Using video modeling to teach complex play sequences to a preschoole r with autism [El ectronic version]. Journal of Positive Behavior Interventions, 5 (1), 5-11. Deb, S., Ellis, D., Ellis, H., & Fraser, W. ( 1994). A preliminary study of right hemisphere cognitive deficits and impaired so cial judgments among young people with AspergerÂ’s syndrome. European Child and Adolescent Psychiatry, 3 , 255-266. Delano, M. (2003). The effects of social stories on the social engageme nt of children with autism. Dissertation Abstracts International, 64 (07), 2444. (UMI No. 3097261) Del Valle, P., McEachern, A., & Chambers, H. (2001). Using social st ories with autistic children [Electronic version]. Journal of Poetry Therapy, 14 (4), 187-197. Ehlers, S., & Gillberg, C, (1998). High-func tioning people with autism and Asperger syndrome: A literature review. In E. Schopler & M. Mesibov (Eds.), Asperger syndrome or high-functioning autism? (pp. 79-106). New York: Plenum Press. Ehlers, S., Gillberg, C, & Wing, L. (1999). A screening questionnaire for Asperger syndrome and other high-functioning autism spectrum disorders in school age children. Journal of Autism and Developmental Disorders, 29 , 129-141. Elder, J. H. (1997). Single subject ex perimentation for psychiatric nursing. Archives of Psychiatric Nursing, 11 (3), 133-138. Feinberg, M. (2001). Using social stories to teach specific so cial skills to individuals diagnosed with autism. Dissertation Abstracts International, 62 (08), 3797. (UMI No. 3024504) Fombonne, E. (2003). Epidemiological survey s of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders, 33 , 365-381. Freeman, K. (2003). Single subject designs. In J.C. Thomas, & M. Hersen (Eds.), Understanding research in clinic al and counseling psychology (pp. 181-208). Mahwah, NJ: Lawrence Erlbaum Associates. Frith, U. (1989). Autism: Explaining the enigma . Oxford: Blackwell. Frith, U. (1991). Autism and Asperger syndrome . Cambridge: University Press.

PAGE 157

144 Ghaziuddin, M. (2005). A family hist ory study of Asperger syndrome. Journal of Autism and Developmental Disorders, 35, 177-182. Ghaziuddin, M., Ghaziuddin, N., & Greden, J. (2002). Depression in persons with autism: Implications for research and clinical care. Journal of Autism and Developmental Disorders, 32, 299-306. Ghaziuddin, N., King, C., Naylor, M., & Ghaziu ddin, M. (2002). Anxi ety contributes to suicidality in depressed adolescents. Depression and anxiety, 11 (3), 134-138. Ghaziuddin, M., Weidmer-Mikhail, E., & Ghaziuddin, N. (1998). Comorbidity of Asperger syndrome: A preliminary report. Journal of Intellectual Disabilities Research, 42 , 27983. Gillberg, C. (1989). Asperger syndrome in 23 Swedish children. Developmental Medicine and Child Neurology, 31 ,520-531. Gillberg, C., & Cederlund, M. (2005). Asperger syndrome: Familial and preand perinatal factors. Journal of Autism and Developmental Disorders, 35, 159-166. Gillberg, C., Gillberg, I., Rastam, M., & Wei ss, E. (2001). The Asperger Syndrome (and high-functioning autism) Diagnostic Interv iew (ASDI): A preliminary study of a new structured clinical interview. Autism, 5, 57-66. Gilliam, J. (2001). Gilliam AspergerÂ’s Diagnostic Scale . Austin, Texas: Pro-Ed, Inc. Goldstein, H. (2002). Communication intervention for children with autism: A review of treatment efficacy. Journal of Autism & Developmental Disorders, 32 , 373-396. Graetz, J. (2003). Promoting so cial behaviors for adolescent s with autism with social stories. Dissertation Abstracts International, 64 (02), 460. (UMI No. 3079339) Gray, C. (1998). Social stories and comi c book conversations with students with Asperger syndrome and high-functioning autism. In E. Schopler & M. Mesibov (Eds.), Asperger syndrome or high-functioning autism? (pp. 167-198). New York: Plenum Press. Gray, C., & Garand, J. (1993). Social storie s: Improving responses of students with autism with accurate social information. Focus on Autistic Behavior, 8 (1), 1-10. Greenberg, D., Hodge, S., Sowinski, J., & Nicoll, D. (2002). Excess of twins among affected sibling pairs with autism: Imp lications for the etiology of autism. American Journal of Human Genetics, 69 , 1062-1067. Greenway, C. (2000). Autism and Asperger synd rome: Strategies to promote prosocial behaviours. Educational Psychology in Practice, 16 , 496-486.

PAGE 158

145 Grossman, J., Klin, A., Carter, A., & Volkmar, F. (2000). Verbal bi as in recognition of facial emotions in children with Asperger syndrome. Journal of Child Psychology and Psychiatry, 41 , 369-379. Grove, T. (1988). Barnaby Rudge a case study in autism. Communication, 22 , 12-16. Haggerty, N., Black, R., & Smith, G. (2005). Increasing self-managed coping skills through social stories and apron storytelling. Teaching Exceptional Children, 37 , 40-47. Hagiwara, T., & Myles, B. (1999). A multimed ia social story intervention: Teaching skills to children with autism. Focus on Autism and other Developmental Disabilities, 14 , 82-95. Hallmayer, J., Bower, C., Croen, L., Glasson, E ., Grether, J., Petters on, B., et al. (2002). On the twin risk of autism. American Journal of Human Genetics, 71 , 941-946. Hardan, A., & Sahl, R. (1999). Suicidal beha vior in children and adolescents with developmental disorders. Research in Developmental Disabilities, 20, 287-296. Harnadek, M., & Rourke, B. (1994). Principa l identifying features of the syndrome of nonverbal learning disab ilities in children. Journal of Learning Disabilities, 27, 241-252. Head, J. (2002). Working with adolescents : Constructing identity . London: Falmer Press. Ho, A., Todd, R., & Constantino, J. (2005). Brie f report: Autistic tra its in twins vs. nontwins – A preliminary study. Journal of Autism and Developmental Disorders, 35, 129-133. Horner, R., Carr, E., Strain, P., Todd, A ., & Reed, H. (2002). Problem behavior interventions for young children with autism: A research synthesis. Journal of Autism and Developmental Disorders, 32 , 423-446. Howlin, P. (2003). Can early interventions alte r the course of autism? In G. Bock & J. Goode (Eds.), Autism: Neural basis and treatment possibilities (pp. 250-265). Chichester: John Wiley & Sons Ltd. Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcomes for children with autism. Journal of Child Psychology and Psychiatry, 45, 212-229. Hultman, C., Sparen, P., & Cnattingius, S., ( 2002). Perinatal risk factors for infantile autism. Epidemiology, 13 , 417-423. Hume, K., Bellini, S., & Pratt, C. (2005) . The usage and perceived outcomes of early intervention and early childhood progra ms for young children with autism spectrum disorder. Topics in Early Childhood Special Education, 25, 195-207.

PAGE 159

146 Hwang, B., & Hughes, C. (2000). The effects of so cial interactive trai ning on early social communication skills of children with autism. Journal of Autism and Developmental Disorders, 30 , 331-343. Ivey, M., Heflin, L., & Alberto, P. (2004). The use of social stories to promote independent behaviors in novel even ts for children with PDD-NOS. Focus on Autism and other Developm ental Disabilities, 19 , 164-176. Jones, G. (2000). Autistic spectrum disorder: Diagnostic difficulties. Prostaglandins, Leukotrienes, and Essential Fatty Acids, 63 , 33-36. Jordan, R. (1999). Autism spectrum disorders: An introductory handbook for practitioners . London: Fulton Press. Kamps, D., Royer, J., Dugan, E., Kravits, T ., Gonzalez-Lopez, A., Garcia, J., et al. (2002). Peer training to facil itate social intera ction for elementary students with autism and their peers [Electronic version]. Exceptional Children, 68 , 173-187. Kanner, L. (1943). Autistic disturbances of affective contact . Nervous Child, 2, 217-230. Kazdin, A. E. (1982). Single-case research designs: Methods for clinical and applied settings . New York: Oxford University Press. Keeling, K., Smith-Myles, B., Gagnon, E., & Simpson, R. (2003). Using the Power Card strategy to teach sportsmanship skills to a child with autism [Electronic version]. Focus on Autism and other Developmental Disabilities, 18 , 105-111. Kerbeshian, J., & Burd, L. (1986). Asperger Â’s syndrome and TouretteÂ’s syndrome: The case of the pinball wizard. British Journal of Psychiatry, 148 , 731-736. Kikuchi, T., & Koga, S. (2003). Recognition of others' and own facial expressions and production of facial expression: Ch ildren and adults with autism. Japanese Journal of Special Education, 39 (2), 21-29. King, I. M. (1981). A theory for nursing: Systems, concepts, process . New York: J. Wiley. Klin, A., Pauls, D., Schultz, R., & Volkmar, F. (2005). Three diagnostic approaches to Asperger syndrome: Implications for research. Journal of Autism and Developmental Disorders, 35, 221-234. Klin, A., & Volkmar, F. (2000). Diagnostic issu es in Asperger Syndrome. In A. Klin, F. Volkmar, & S. Sparrow (Eds), Asperger syndrome (pp. 25-71). New York: Guilford Press. Klin, A., Volkmar, F., & Sparrow, S. (Ed.). (2000). Asperger syndrome . New York: Guilford Press.

PAGE 160

147 Koegel, L., & Koegel, R. (1995). Motivating communication in childre n with autism. In E. Schopler, & G. Mesibov (Eds ), Learning and cognition in autism (pp.73-87). New York: Plenum Press. Kuoch, H., & Mirenda, P. (2003). Social story intervention for young children with autism spectrum disorders [Electronic version]. Focus on Autism and other Developmental Disabilities, 18 ,219-227. Krug, D., & Arick, J. (2003). Krug Asperger’s Disorder Index . Austin, Texas: Pro-Ed Inc. Kuttler, S., Myles, B., & Carlson, J. (1998). The use of social stories to reduce precursors to tantrum behavior in a student with autism. Focus on Autism and other Developmental Disabilities, 13 , 176-182. Landa, R. (2000). Social language use in Asperger syndrome and high-functioning autism. In A. Klin, F. Volkmar, & S. Sparrow (Eds.), Asperger syndrome (pp. 125153). New York: Guilford Press. Landa, R., Piven, J., Wzorek, M., Gayle, J., Chase, G., & Folstein, S. (1992). Social language use in parents of autistic individuals. Psychological Medicine, 22 , 245254. LeBlanc, L., Coates, A., Daneshvar, S., Charl op-Christy, M., Morris, C., Lancaster, B., et al. (2003). Using video modeling and rein forcement to teach perspective-taking skills to children with autism [Electronic version]. Journal of Applied Behavior Analysis, 36 , 253-257. Lister Brooks, S., & Bowler, D. (1992). Autism by another name? Semantic and pragmatic impairments in children. Journal of Autism and Development Disorders, 22 , 61-82. Lord, C., Risi, S., Lambrecht, L., Cook, E., Le venthal, B., DiLavor e, P., et al. (2000). The Autism Diagnostic Observation Schedul e – Generic: A standard measure of social and communication de ficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205-223. Lord, C., Rutter, M., & Le Couteur, A. ( 1994). Autism Diagnostic Interview – Revised: A revised version of a diagnostic intervie w for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24, 659-85. Lorimer, P., Simpson, R., Myles, B., & Ganz, J. (2002). The use of social stories as a preventive behavioral intervention in a home setting with a child with autism [Electronic version]. Journal of Positive Behavioral Interventions, 4 , 53-60. Mahler, M.S. (1952). On child psychoses and schizophrenia: Autistic and symbiotic infantile psychosis. Psychoanalytic Study of the Child, 7 , 286-305.

PAGE 161

148 Mancina, C., Tankersley, M., Kamps, D., Kraw itz, K., & Parrett, P. (2000). Reduction of inappropriate vocalizations for a child using a self-management treatment program. Journal of Autism and Developmental Disorders, 30 , 599-606. McConnell, S. (2002). Interventions to facilitate social inte raction in young children with autism: Review of available research and recommendations for educational interventions and future research. Journal of Autism and Developmental Disorders, 32 , 351-372. McKelvey, J., Lambert, R., Mottron, L., & Shevell, M. (1995). Right-hemisphere dysfunction in AspergerÂ’s syndrome. Journal of Child Neurology, 10 , 310-314. Merrell, K., Streeter, A., & Bo elter, E. (2001). Validity of the Home and Community Social Behavior Scales: Comparison with five behavior-rating scales. Psychology in the Schools, 38 , 313-325. Miller, J., & Ozonoff, S. ( 1997). Did AspergerÂ’s cases ha ve Asperger disorder? A research note. Journal of Child Psychology and Psychiatry, 38 , 247-251. Mithaug, D., & Mithaug, D. (2003). Effects of teacher-directed versus student-directed instruction on self-management of young children with disabilities. Journal of Applied Behavior Analysis, 36 , 133-136. Morrison, L., Kamps, D., Garcia, J., & Parker , D. (2001). Peer mediation and monitoring strategies to improve initiations and so cial skills for students with autism. Journal of Positive Behavior Interventions, 3 (4), 237-250. Myles, B.S., Bock, S., & Simpson, R. (2001). Asperger Syndrome Diagnostic Scale . Los Angeles: Western Psychological Services. Neuman, S., & McCormick, S. (1995). Single-subject experimental research: Applications for literacy. Newark, DE: Internationa l Reading Association. Newman, B., Reinecke, D., & Meinberg, D. (2000). Self-management of varied responding in three students with autism. Behavioral Interventions, 15 (2), 147-153. Nicoll, L. (1997). Perspectives on nursing theory . Philadelphia: Lippincott. Nikopoulos, C., & Keenen, M. (2004). Effects of video modeling on so cial initiations by children with autism. Journal of Applied Behavior Analysis, 37 , 93-96. Norris, C., & Datillo, J. (1999). Evaluating e ffects of a social st ory intervention on a young girl with autism. Focus on Autism and other Developmental Disabilities, 14 , 180-186. Pelios, L., & Lund, S. (2001). A selective over view of issues on classification, causation, and early intensive behavioral intervention for autism. Behavior Modification, 25 , 678-697.

PAGE 162

149 Pettigrew, J. (1998). Effects of modeling of verbal and nonverbal procedures for interactions with peers thr ough social stories and scaffold ed activities on the social competence of 3and 4-year old childr en with specific language impairments. Dissertation Abstracts International, 59 (05), 1452. (UMI No. 9832229) Potter, C., & Whittaker, C. (1997). Teaching th e spontaneous use of semantic relations through multi-pointing to a child with autism and severe learning disabilities. Child language and Teaching, 13 , 177-193. Quill, K. (1997). Instructional consider ations for young children with autism: The rationale for visually cued instruction. Journal of Autism and Developmental Disorders, 27 , 697-714. Rapin, I. (1996). Practitioner review: Deve lopmental language disorders: A clinical update. Journal of Child Psychology and Psychiatry, 37 , 643-655. Rapin, I., & Allen, D. (1983). Developm ental language disorders: Nosologic considerations. In U. Kirk (Ed), Neuropsychology of language, reading and spelling (pp. 155-183). London: Academic Press. Robinson, J. & Vitale, L. (1954). Childr en with circumscribed interests. American Journal of Orthopsychiatry, 24 , 755-764. Rogers, M., & Myles, B. (2001). Using social stories and comic st rip conversations to interpret social situations for an adoles cent with Asperger syndrome [Electronic version]. Interventions in School and Clinic, 36 , 310-313. Romano, J. (2002). Are social st ories effective in modifying behavior in children with autism? Dissertation Abstracts International, 63 (02), 1046. (UMI No. 3044313) Rowe, C. (1999). Do social stories benefit ch ildren with autism in mainstream primary schools? British Journal of Special Education, 26 (1), 12-14. Rutter, M. (2005). Autism research: Lessons fr om the past and prospects for the future. Journal of Autism and Developmental Disorders, 35, 241-257. Sarokoff, R., Taylor, B., & P oulson, C. (2001). Teaching children with autism to engage in conversational exchanges: Script fading with embedded textual stimuli. Journal of Applied Behavior Analysis, 34 , 81-84. Scattone, D., Wilczynski, S., Edwards, R., & Rabian, B. (2002). Decreasing disruptive behaviors of children with autism using social stories [Electronic version]. Journal of Autism and Developmental Disorders, 32 , 535-543. Schreibman, L., Whalen, C., & Stahmer, A. (2000). The use of video priming to reduce disruptive transition behavior in children with autism. Journal of Positive Behavior Interventions, 2 (1), 3-11.

PAGE 163

150 Scott, F., Baron-Cohen, S., Bolton, P., & Brayne, C. (2002). The CAST (Childhood Asperger Syndrome Test): Preliminar y development of a UK screen for mainstream primary-school age children. Autism, 6 , 9-31. Shabani, D., Katz, R., Wilder, D., Beauch amp, K., Taylor, C., & Fischer, K. (2002). Increasing social initiations in children with autism: Effects of a tactile prompt. Journal of Applied Behavior Analysis, 35 , 79-83. Sherer, M., Pierce, K., Paredes, S., Kisacky, K., Ingersoll, B., & Schreibman, L. (2001). Enhancing conversation skill s in children with autis m via video technology. Behavior Modification, 25 (1), 140-158. Shipley-Benamou, R., Lutzker, J., & Taubman, M. (2002). Teaching daily living skills to children with autism through video modeling [Electronic version]. Journal of Positive Behavior Interventions, 4 (3), 165-176. Sidman, M. (1960). Tactics of scientific research . Oxford: Basic Books. Siegel, B. (1996). The world of the autistic child . Oxford: Oxford University Press. Silver, M., & Oakes, P. (2001). Evaluation of a new computer intervention to teach people with autism or Asperger syndrome to recognize and predict emotions in others [Electronic version]. Autism, 5 (3), 299-316. Simpson, R., & Myles, B. (1998). Aggr ession among children and youth who have Asperger's syndrome: A different population. Preventing School Failure, 42 (4), 149-154. Ssucharewa, G. & Wolff, S. (1996). The first account of the syndrome Asperger described? Translation of a paper entit led "Die schizoiden Psychopathien im Kindesalter" by Dr. G.E. Ssucharewa. European Child and Adolescent Psychiatry, 5 , 119-132. Staley, M.J. (2001). An investigation of soci al story effectivene ss using reversal and multiple baseline designs. Dissertation Abstracts International, 62 (10), 4770. (UMI No. 3029163) Stevenson, C., Krantz, P., & McClannahan, L. (2000). Social interaction skills for children with autism: A script fading procedure for nonreaders. Behavioral Interventions, 15 , 1-20. Swaggert, E., Gagnon, E., Bock, S., Earles, T., Quinn, C., Myles, B., et al. (1995). Using social stories to teach social and behavi oral skills to children with autism. Focus on Autistic Behavior, 10 (1), 1-16. Szatmari, P. (1998). Differential diagnosis of Asperger disorder. In E. Schopter, G. Mesibov, & L. Kunce (Eds.), Asperger syndrome or high-functioning autism? (pp. 61-76). New York: Plenum Press.

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151 Szatmari, P., Bryson, S., Streiner, D., Wils on, F., Archer, L., & Ryerse, C. (2000). Twoyear outcome of preschool children w ith autism or Asperger’s syndrome. American Journal of Psychiatry, 157 , 1980-1987. Tantham, D. (1988a). Lifelong eccentricity and so cial isolation I: Psyc hiatric, social, and forensic aspects. British Journal of Psychiatry, 153 , 777-782. Tantham, D. (1988b). Lifelong eccen tricity and social isolation II: Asperger’s syndrome or schizoid personality disorder. British Journal of Psychiatry, 153, 783-791. Tawney, J. W., & Gast, L. (1984). Single subject research in special education . Columbus: Merrill. Taylor, B., Farrington, C., Favot -Mayaud, I., Li, J., Miller, E., Petropoulos, M.C., et al. (1999). Autism and measles, mumps, a nd rubella vaccine: No epidemiological evidence for a causal association. The Lancet, 353 , 2026-2029. Taylor, B., & Levin, L. (1998). Effects of a tactile prompt. Journal of Applied Behavior Analysis, 31 , 651-654. Thiemann, K., & Goldstein, H. (2001). Social stories, written text, and video feedback: Effects on social communication of children with autism. Journal of Applied Behavior Analysis, 34 , 425-446. Towbin, K. (1997). Autism and Asperger syndrome. Current Opinions in Pediatrics, 9 , 361-366. Tuff, L., Szatmari, P., Jones, M., Br yson, S., Mahoney, W., & Bartolucci, (1999). Familial factors influence level of functioning in pervasive developmental delay. American Journal of Child and Adolescent Psychiatry, 38 , 741-753. Volkmar, F. (2005). Critical notice: Autism Diagnostic Interview – Revised. Journal of Child Psychology and Psychiatry, 46, 1020-1021. Volkmar, F., Klin, A., & Pauls, D. (1998). No sological and genetic aspects of Asperger syndrome. Journal of Autism and Developmental Disorders, 28 , 457-463. Weiss, M., Harris, S., & Gill-Weiss, M. (2001). Reaching out, joining in: Teaching social skills to young children with autism . Bethesda, MD: Woodbine House. Wellman, H., Baron-Cohen, S., Caswell, R., Gomez, J., Swetteham, J., Toye, E., et al. (2002). Thought bubbles help children with autism acquire an alternative to a theory of mind. Autism, 6 (4), 343-363. Wert, B., & Neisworth, J. (2003). Effects of video modeling on spontaneous requesting in children with autism [Electronic version]. Journal of Positive Behavior Interventions, 5 (1), 30-34.

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152 Wing, L. (1981). AspergerÂ’s syndrome: A clinical account. Psychological Medicine, 11 , 115-129. Wing, L. (1996). The autistic spectrum: A guide for parents and professionals . London: Constable. Wing, L. (1998). The history of Asperger S yndrome. In E. Schopler, G. Mesibov, & L. Kunce (Eds.), Asperger syndrome or high-functioning autism? (pp. 11-28). New York: Plenum Press. Wing, L. (2000). Past and future research of As perger syndrome. In A. Klin, F. Volkmar, & S. Sparrow (Eds.), Asperger syndrome (pp. 418-432). New York: Guilford Press. Wing, L. (2005). Reflections on opening PandoraÂ’s box. Journal of Autism and Developmental Disorders, 35, 197-203. Wing, L., & Gould, J. (1979). Severe impairment s of social interac tion and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorders, 9, 11-29. Wolff, S. (1995). Loners: The life path of unusual children . London: Routledge. Wolff, S. (1998). Schizoid personality in ch ildhood: The links with Asperger syndrome, schizophrenia, spectrum disorders, and elective mutism. In E. Schopler, G.B. Mesibov, & L. Kunce (Eds), Asperger syndrome or high-functioning autism? (pp. 123-142). New York: Plenum Press. Wolff, S. (2000). Schizoid personality in ch ildhood and Asperger Syndrome. In A. Klin, F.Volkmar, & S. Sparrow (Eds.), Asperger syndrome (pp. 278-305). New York: Guilford Press. World Health Organization (1993). International Classification of Diseases (10th ed.). Geneva: Author.

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153 BIOGRAPHICAL SKETCH Dr. Kathleen Purcell Washburn graduate d from Florida Junior College in Jacksonville, Florida with an Associate of Science in Nursing degree, and went on to obtain her Bachelor of Science in Nursing degr ee from the University of South Florida in Tampa, Florida. Most of her nursing career wa s spent in Jacksonville, Florida, where she worked in obstetrics, oncology, intravenous therapy, and critical care. She finally found her niche when she began working in the home health department, and remained there until her graduation from the University of Florida with a Master of Science in Nursing degree, and her national certification as a Family Nurse Practitioner. While enrolled in doctoral classes, Dr. Washburn worked as a nurse practitioner at the Neurological Care Center in Jacksonv ille, Florida, a practice that served both pediatric and adult patie nts. It was during this time she developed a special interest in pervasive developmental delay, and became especially interested in those adolescents with AspergerÂ’s syndrome. Sh e currently facilitates a suppo rt group for adolescents with AspergerÂ’s syndrome and is frequently aske d to lecture about the characteristics of individuals with autistic sp ectrum disorders and AspergerÂ’s syndrome, and interventions to improve socially acceptable behaviors for children with high functioning autism and AspergerÂ’s syndrome. Dr. WashburnÂ’s areas of research interest s include the social health of rural communities, adolescents with high-risk beha viors, and using grounded theory to explore factors of behavioral change in individuals with chronic mental health disorders.

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