Introduction: This study aims to explore the ways in which Asperger’s Syndrome and High Functioning Autism are understood by those who have received a diagnosis in adulthood. The experience and understanding of diagnosis in adulthood has been little researched with only a small number of qualitative studies having been completed (Cousins, 2001; Molloy & Vasil, 2004; Punshon, 2006). These studies all highlight the importance of the beliefs held about Asperger’s Syndrome on the experience of diagnosis and post-diagnostic identity development. Due to the increasing awareness and diagnosis of Asperger’s Syndrome in adulthood, research into how the diagnosis is understood is invaluable for clinicians supporting individuals through the process. Method: This study uses a Q-methodology (Stephenson, 1953) to build upon recent qualitative research. The methodology is based on two techniques, the Q-sorting process and Q-factor analysis. For the Q-sorting process a set of 52 statements were developed which attempted to provide coverage of the understanding of Asperger’s Syndrome currently in the public domain. A wide range of sources were used to develop the Q-set, including a focus group with six adults with Asperger’s Syndrome. Eighteen individuals who had received their diagnosis in adulthood were recruited to complete the Q-sorting process, which involved them having to rank the statements based upon their agreement with them. Additionally a semi-structured interview was completed to gather information regarding the sort and supplementary demographic information. Results: Q-factor analysis involving principal components analysis and varimax rotation was then carried out. This led to four statistically significant and theoretically meaningful factors being extracted. The four factors were interpreted using the additional information gathered, and were labelled ‘An important part of me’, ‘It is a lifelong disability’, ‘Confused about myself, and ‘Support can bring improvement’. Discussion: The findings were discussed with consideration of the clinical implications and scope for further research. Particular emphasis was placed on discussing three main areas ‘acceptance and adjustment’, ‘consequences of diagnosis’ and ‘theoretical conceptualisations’. The importance of further research into the links between understanding and mental health were highlighted.

The present study measures the effect of ACT on 3 children with high functioning autism. In a multiple probe design, the 3 participants received 15-20 minute ACT sessions over 20 days. The children completed a variety of worksheets, games, and activities stretched across the main components of ACT (cognitive defusion, values, commitment to action, acceptance, self as context, and being present). The frequencies of maladaptive target behavior were tracked daily for each participant. The success of ACT sessions was also measured by the AAQ (K), AAQ-II, and ACT self-report. Results are discussed regarding the scores of the assessments, longevity of the ACT sessions, and the frequency of target behaviors. The discussion looks the limitations of the currents study as well as how research can be extended in the future.

There are a number of evidenced-based practices which aim to improve the social skills of children with high functioning autism (HFA). An emerging field of study is to develop social skills interventions that incorporate restricted and repetitive interests to increase social skills. Their results are promising and suggest improved social skills in students with HFA. The current study has aimed to incorporate a common interest among elementary age children with HFA in social skill instruction within a structured setting. A multiple baseline across behaviors single subject design was used to collect data on the accuracy with which two young males applied social skills within the structured “club” setting. Data were collected by determining whether the students had an opportunity to use the social skill, and whether they used the skill correctly. While the results do not suggest a functional relationships between the participants’ social skill accuracy and the intervention, the data show a positive trend which indicates an overall increase in their social skill accuracy.

This study examined the moderating role of motivational tendencies for social approach and avoidance behavior, as measured by anterior EEG asymmetry, on symptom expression. In particular, this study aimed to replicate and extend previous findings that measures of anterior EEG asymmetry provide an important marker of subgroups of HFA children that significantly differ from each other, and controls, on measures of social communication impairment. EEG data were collected across two occasions on 51 HFA and 44 non-HFA children. EEG asymmetry was computed for homologous electrode pairs (e.g., lnF4-lnF3). More positive scores were indicative of relative left frontal asymmetry. Data on social and behavioral functioning were collected via parent- and self-report. Results of this short-term longitudinal study revealed moderate test-retest reliability for midfrontal asymmetry, r (65) = .39, p < .01. Results supported previous research demonstrating the differential relation of EEG asymmetry to symptom impairment among HFA children, such that parents of LFA-HFA children reported lower levels of impairment than RFA-HFA children on the SCQ Total Score, F (3, 47) = 3.58, p = .065, and Social Interaction Domain, F (3, 47) = 4.59, p < .05. Results also indicated that parents of LFA-HFA children reported higher levels of general communicative competence on the CCC-2, GCC, F (3, 47) = 6.83, p = .01, but greater impairment in pragmatic communication when compared to RFA-HFA children, SIDC, F (3, 47) = 4.41, p < .05. Additional analyses indicated that RFA was associated with early and more confident recognition of atypical (and stereotypically autistic) development based on retrospective parent-report (ADI-R #86), while LFA was associated with early, but less unambiguously autistic impairment, X2 (51) = 3.75, p = .05. This study demonstrates that anterior EEG asymmetry subgroups are reliable and useful markers of phenotypic variability that are meaningfully related to the experience and expression of symptoms of core autism impairment.

Research shows that there is a gap between interest and experience in the area of sexuality for individuals with autism. Also, although these individuals have unique learning requirements pertaining to their sexuality, there is no consensus on the provision and content of such education. Using a socially inclusive theoretical lens founded on existing models of disability and competence, this bilingual study (a) developed a conceptual framework of sexuality education, as understood by adolescents living in Ontario with a diagnosis of high-functioning autism and their caregivers; (b) used extant texts to support the conceptualization provided by youth and caregivers; and (c) identified personal strengths and barriers, as well as societal supports and barriers that impact sexuality education for these youth. Using a qualitative orientation, this study employed in-depth interviews, surveys, and a literature review to better understand the topic under investigation. Twenty participants from 8 families took part in these interviews, including 9 adolescents and 11 caregivers. Survey and extant textual-analysis data were used to support the findings. Sexuality education content was conceptualized as a combination of facts and sociosexual norms, with emphasis on outcomes. Additionally, safety and pleasure were identified as important content areas, including the historically absent aspect of shared enjoyment. Some content areas were part of a greater discourse of normalization. Sexuality education was seen as a combination of formal and informal activities that are developmentally appropriate, proactive, and take place across various settings and groupings. Caregivers were cited as the primary providers of informal education, whereas schools and other community partners were seen as formal providers of education. Various supports and barriers were identified, some of which were viewed as both. Themes related to media and technology pervaded all findings. This study provides further emic and etic understanding of the subject with implications for practice, policy, and theory.

Research shows that there is a gap between interest and experience in the area of sexuality for individuals with autism. Also, although these individuals have unique learning requirements pertaining to their sexuality, there is no consensus on the provision and content of such education. Using a socially inclusive theoretical lens founded on existing models of disability and competence, this bilingual study (a) developed a conceptual framework of sexuality education, as understood by adolescents living in Ontario with a diagnosis of high-functioning autism and their caregivers; (b) used extant texts to support the conceptualization provided by youth and caregivers; and (c) identified personal strengths and barriers, as well as societal supports and barriers that impact sexuality education for these youth. Using a qualitative orientation, this study employed in-depth interviews, surveys, and a literature review to better understand the topic under investigation. Twenty participants from 8 families took part in these interviews, including 9 adolescents and 11 caregivers. Survey and extant textual-analysis data were used to support the findings. Sexuality education content was conceptualized as a combination of facts and sociosexual norms, with emphasis on outcomes. Additionally, safety and pleasure were identified as important content areas, including the historically absent aspect of shared enjoyment. Some content areas were part of a greater discourse of normalization. Sexuality education was seen as a combination of formal and informal activities that are developmentally appropriate, proactive, and take place across various settings and groupings. Caregivers were cited as the primary providers of informal education, whereas schools and other community partners were seen as formal providers of education. Various supports and barriers were identified, some of which were viewed as both. Themes related to media and technology pervaded all findings. This study provides further emic and etic understanding of the subject with implications for practice, policy, and theory.

京都大学 / 新制・課程博士 / 博士(医学) / 甲第23606号 / 医博第4793号 / 新制||医||1055(附属図書館) / 京都大学大学院医学研究科医学専攻 / (主査)教授 林 康紀, 教授 古川 壽亮, 教授 髙橋 良輔 / 学位規則第4条第1項該当 / Doctor of Medical Science / Kyoto University / DFAM

In 1944 Hans Asperger, a Viennese physician, identified a neurological disorder which hinders a person’s ability to communicate and interact socially. Lorna Wing’s research reintroduced the disorder in 1981, but Asperger’s Syndrome was not recognized in the United States until 1994. This study, aimed at generating knowledge about the lived experience of individuals with Asperger’s, is grounded in hermeneutic phenomenology. The writings of Martin Heidegger (1962, 1971), Hans Gadamer (1975/2003), and Edward Casey (1993) provided the philosophical foundation that helped me to open up the phenomenon as I answered the question, “What is the lived-experience of individuals with Asperger’s Syndrome?” Van Manen’s (2003) six research activities served as a framework: (a) turning to a phenomenon which seriously interests us and commits us to the world; (b) investigating the experience as we live it rather than as we conceptualize it; (c) reflecting on the essential themes which characterize the phenomenon; (d) describing the phenomenon through the art of writing and rewriting; (e) maintaining a strong and oriented pedagogical relation to the phenomenon; and (f) balancing the research context by considering parts and whole. Individuals with “Asperger’s Syndrome” navigate the world in a manner that makes sense to them. These adults desire to build nearness in what has been coined a neurotypical world. Five adults with Asperger’s Syndrome were interviewed three times each, sharing their experiences in school, the workplace, and community, elaborating upon how they attempted to fit in with their neurotypical peers. They also shared strategies developed to build nearness and find place in the neurotypical society. Participants reported experiences such as wearing masks as a tool to gain insider status in the neurotypical world, and the sense of exhaustion this behavior involves. They described their experiences with terms such as “bully magnet” and “emotional traffic jam,” in illuminating the daily discomforts they face attempting to meet the expectations of social interaction. The experience of bullying particularly seems to have had a lifelong impact. Recommendations for further research include examining the effect of early diagnosis, and how early transition experiences contribute to social development. A study on the effects of bullying that Aspies encountered during their school years would also add valuable information to the literature. Finally, work is a significant part of every adult’s life. Recommendations for employers include exploring mentoring or natural supports to employees who disclose the disorder. Additional supports and resources would increase performance and job retention. / Ph. D.

Doctor of Education / Department of Educational Leadership / W. Franklin Spikes / Non-profit organizations come in many shapes and sizes and in some cases, encompass a significant portion of community organizations. Since these agencies are largely sustained by the work of volunteers, it is a worthy subject to examine. The diversity and complexity of non-profits available among communities presents a need for volunteers’ to be skilled, trained, and experienced in an array of arenas. Non-profit organizations depend on volunteers and allow these entities to reach a larger population than exclusively with the limited staff members available (Fisher & Cole, 1993). This notion suggested the topic of motivation and retention of volunteers among community non-profits for the focus of this study to help organizations effectively deliver their mission. More specifically, this investigation centered on people who are considered high-functioning by the administrators with whom they work through the process of interviews. Non-profit organizations located in Denver, Colorado were selected to participate. The administrators of the chosen agencies were contacted and asked to identify volunteers in their program they classify as high-functioning. Once this list was identified, these individuals were contacted and asked to participate in an interview. This study focused on high-functioning volunteers for data collection because it was anticipated their characteristics and viewpoints will aid in the understanding of motivation and retention factors for anyone working with and supervising volunteers in the 21st century. The findings from the study provide a diverse assessment of the topic of volunteer motivation and retention. The data collected suggests that adult volunteers have varying needs and the importance for volunteer administrators to take these differences into consideration in their management and programming efforts.

The aim of the current study was to bring greater clarity to our understanding of the relation between theory of mind (ToM) and executive function (EF), specifically working memory (WM) and inhibitory control (IC), during typical adolescent development and of the specific nature of impairments in ToM and EF in the cognitive profile of individuals with Asperger's Syndrome and High Functioning Autism (AS/HFA). In total, 80 participants, half typically developing (TD) and half with AS/HFA, participated in the study. TD participants were matched to the participants with AS/HFA on chronological age and gender. Participants were tested across two test sessions, approximately one year apart. For Session 1, the TD participants ranged in age from 10.1 to 17.9 years (M = 14.68, SD = 2.05), and the participants with AS/HFA ranged in age from 10.2 to 17.9 years (M = 14.64, SD = 2.19). I tested the participants on a ToM battery, consisting of an emotional perspective taking measure, the Mind in the Eyes Test, and two cognitive perspective taking measures, the Advanced ToM Vignettes, designed by the researcher, and Happé's Strange Stories. In addition, an EF battery was administered, containing a Reading Span Task, Change Detection Task, and Flanker Task, which assessed verbal WM, visual WM, and IC, respectively. Firstly, I found that older children and adolescents with AS/HFA, especially the girls with AS/HFA, performed worse on ToM measures tapping cognitive perspective taking relative to TD peers. Secondly, I observed that ToM and EF continue to develop during later childhood and adolescence as part of both typical and atypical development. Thirdly, I found that verbal WM and IC were more strongly associated with ToM in the AS/HFA group, indicating that individuals with AS/HFA may require more executive resources for ToM reasoning. Based on my results, I suggest that ToM and EF are still developing during later childhood and adolescence in both TD individuals and individuals with AS/HFA, indicating that the brain regions supporting ToM and EF processing are still plastic and can therefore be targeted for intervention.