This thesis explores participatory research involving the author and a small group of adults with Asperger’s syndrome, as co-researchers. The research was based on the assumption that people with Asperger’s syndrome think differently from neuro-typical people (people who do not have Asperger’s syndrome or autism). It is not denied that people with Asperger’s syndrome have difficulties, but the thesis argues that these are caused by living in a world which is dominated by neuro-typical people who do not understand or allow for the differences that people with Asperger’s syndrome have. The research is based on the assumption that adults with Asperger’s syndrome are able to be co-researchers and that part of the task of the researcher and the co-researchers was to find a way of working together that was enabling to all involved in the research. The original aim of the research was to ascertain what kind of service provision adults with Asperger’s syndrome wanted and this formed the research question: ‘What support do adults with Asperger’s syndrome want?’ The findings of the research challenge traditional notions of support as the emphasis is taken away from support to consider forms of understanding. It has resulted in the proposal of a new way of understanding Asperger’s syndrome. It proposes models for understanding how people with Asperger’s syndrome and neuro-typical people relate to each other. These models challenge a currently prevailing deficit-based understanding of Asperger’s syndrome. The author and the co-researchers worked collaboratively to design research tools, collect and analyse data and disseminate findings. The data was collected from other adults with Asperger’s syndrome who took part in questionnaires and then different adults with Asperger’s syndrome who took part in a focus group and individual interviews. The work was informed by the literature on spatial understandings of how society is ordered. The thesis uses this spatial understanding as a way of analysing how people with Asperger’s syndrome are regarded in a society which is dominated by people who are neuro-typical. Insights from a spatial understanding are also used to consider the process of the research, including an application of the social model of disability to participatory research involving adults with Asperger’s syndrome. My original contribution to knowledge is that I have demonstrated that people with Asperger’s syndrome have the potential to work in group situations on a complex piece of research. I have shown that people with Asperger’s syndrome are able to make a significant contribution to the understanding of how people with Asperger’s syndrome and neuro-typical people relate to each other. I have also demonstrated how a non-disabled researcher and co-researchers with Asperger’s syndrome can work together and devise working methods which are enabling. In the words of the thesis, I have demonstrated how an ‘autistic research space’ can be created. This thesis discusses the role of the neuro-typical researcher in the creation of this research space. The research is regarded as having been co-produced and the meaning of this is explored. The thesis discusses the nature of participatory research using a spatial understanding. Emancipatory research is said to be based on the social model of disability, where non-disabled researchers are not involved. I have shown that participatory research can also be based on the insights from the social model of disability and achieve the outcomes required for emancipatory research. I have proposed a framework for planning and analysing participatory research. Perhaps the most significant contribution to knowledge is the new way of understanding Asperger’s syndrome proposed by the research which challenges the more traditionally accepted deficit based model.

This research is an exploratory investigation into the convergence of Asperger‟s syndrome and Nonverbal learning disability and the inclusion of these learners into mainstream schools. Conceptual research has been used based on questions asked around Asperger‟s syndrome, Nonverbal learning disability, convergences and differences between the disabilities based on the history, etiology, assessment and diagnosis of each disorder as well as alternative forms of assessment and diagnosis. Due to the wide body of literature available in this area of research and the nature of conceptual research, this study is largely literature based. The aim of the research is to look at the literature that supports the convergence between Asperger‟s syndrome and Nonverbal learning disability and to study the assessment tools that are being used to diagnose Asperger‟s syndrome and Nonverbal learning disability to see if various tools can be taken from both batteries of tests and used as one. An important part of this research is its placement in the educational context of inclusion. The results from this research will add to the literature already available on this topic, emphasising the importance of accurate and thorough investigation and assessment towards reaching a diagnosis and the implementation of a valid support plan. The research also offers a discourse concerning learners who are not in a position to be assessed for diagnosis and the benefits of using the SIAS strategy for these learners. The research confirms that there is a convergence between Asperger‟s syndrome and Nonverbal learning disability. It also confirms that, despite the convergence, the assessment and intervention for each disorder is mostly different and a misdiagnosis would not be beneficial to the learner. The findings of the research are also largely confirmatory of literature and other research studies in this area. Finally, the research takes a critical look at the purpose, benefits and possible downfalls of labelling a learner with a specific disability, and how labelling could either help or hinder a learner in their educational pursuits. Possible directions for future research into Asperger‟s syndrome, Nonverbal learning disability, assessment tools and support structures are discussed

MSc Occupational Therapy, Faculty of Health Sciences, University of the Witwatersrand, 2009 / An increase in the prevalence of ASD has led to increased demands on service provision. This questionnaire-based, descriptive study aimed to explore service use and experiences of health and education service delivery by caregivers and their children with ASD in Johannesburg. The sample size was 39. Comparisons were drawn between the experiences of the participants accessing the private and public service sectors. Children were diagnosed at an average age of 4 years; 2 years after the first symptoms were noted by their caregivers. Families accessed a mean of 3 institutions and 6 professionals in seeking diagnosis and treatment. No specific referral patterns could be established. Challenges to service access identified by caregivers included: logistical problems, lack of professional knowledge and experience, poor parental coping and insight, and lack of community support. Solutions identified by the caregivers included: marketing, training, better referral procedures, and establishment of educational facilities.

Although the concept of quality of life (QOL) has become increasingly popular in the past few decades in a number of fields of research, few studies have specifically examined QOL for high-functioning individuals with autism spectrum disorders. Several studies have found that objectively measured outcomes for adults with high-functioning autism (HFA) and Asperger's syndrome (AS) tend to be poor in terms of employment, relationships, mental health, and independence. However, it has been recently suggested that in order to obtain a more accurate depiction of overall QOL, subjective impressions must be examined as well. Recent research has found that the most significant predictor variable of QOL for high-functioning individuals with autism spectrum disorders is the discrepancy between support needed and formal support provided. The current study examined 15 formal support variables and their relationships to subjective QOL scores on the WHOQOL-BREF, in 4 domains (physical health, psychological health, environment, and social relationships) as well as overall QOL. A total of 33 participants completed a questionnaire that included items designed to obtain information on demographics and formal support. Participants also completed the WHOQOL-BREF in order to obtain overall QOL scores along with QOL domain scores. Significant negative correlations were found between Environmental QOL scores and the accessing of a social worker as well as the accessing of social groups. Significant negative correlations were also found between Social QOL scores and the accessing of a psychiatrist and a single-item overall QOL score and the accessing of counselling or psychotherapy. All correlations between formal support factors and QOL scores showed lower QOL scores for those individuals who accessed the supports. The results of standard multiple regression analyses revealed a significant model that accounted for 49% of the total variance in the amount of total supports accessed as well as two other significant models predicting Social QOL and Environmental QOL.

Although the concept of quality of life (QOL) has become increasingly popular in the past few decades in a number of fields of research, few studies have specifically examined QOL for high-functioning individuals with autism spectrum disorders. Several studies have found that objectively measured outcomes for adults with high-functioning autism (HFA) and Asperger's syndrome (AS) tend to be poor in terms of employment, relationships, mental health, and independence. However, it has been recently suggested that in order to obtain a more accurate depiction of overall QOL, subjective impressions must be examined as well. Recent research has found that the most significant predictor variable of QOL for high-functioning individuals with autism spectrum disorders is the discrepancy between support needed and formal support provided. The current study examined 15 formal support variables and their relationships to subjective QOL scores on the WHOQOL-BREF, in 4 domains (physical health, psychological health, environment, and social relationships) as well as overall QOL. A total of 33 participants completed a questionnaire that included items designed to obtain information on demographics and formal support. Participants also completed the WHOQOL-BREF in order to obtain overall QOL scores along with QOL domain scores. Significant negative correlations were found between Environmental QOL scores and the accessing of a social worker as well as the accessing of social groups. Significant negative correlations were also found between Social QOL scores and the accessing of a psychiatrist and a single-item overall QOL score and the accessing of counselling or psychotherapy. All correlations between formal support factors and QOL scores showed lower QOL scores for those individuals who accessed the supports. The results of standard multiple regression analyses revealed a significant model that accounted for 49% of the total variance in the amount of total supports accessed as well as two other significant models predicting Social QOL and Environmental QOL.

Thesis (Ph.D.)--University of Central Florida, 2009. / Advisers: Wilfred Wienke, Cynthia Pearl. Includes bibliographical references (p. 225-254).

Not available

The purpose of this study was to explore the experiences of particular Asperger’s learners in inclusive education settings. Five learners who had all been diagnosed with Asperger Syndrome (AS) and who were between the ages of eight and 13 years were interviewed for this research. Each of the participants was interviewed once using a semi-structured interview schedule and was also asked to participate in three projective drawing tasks. Results indicated that the AS learners’ experiences of inclusion were dependant on four main factors: the pervasiveness of their special interests; their social experiences; the support that they received; and their academic self-concept. These findings were discussed in terms of the existing literature and policies on inclusive education. The implications of this research for the inclusion of AS learners and other special needs learners in inclusive education settings was also discussed.

Thesis (M.A.)--University of Toronto, 2007. / Source: Masters Abstracts International, Volume: 45-06, page: 2799.

Title from PDF of title page (University of Missouri--Columbia, viewed on Feb 26, 2010). The entire thesis text is included in the research.pdf file; the official abstract appears in the short.pdf file; a non-technical public abstract appears in the public.pdf file. Dissertation advisor: Dr. Barbara Townsend. Vita. Includes bibliographical references.