177 research outputs found

    An Investigation of Autism Support Groups on Facebook

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    Autism-affected users, such as autism patients, caregivers, parents, family members, and researchers, currently seek informational support and social support from communities on social media. To reveal the information needs of autism- affected users, this study centers on the research of users’ interactions and information sharing within autism communities on social media. It aims to understand how autism-affected users utilize support groups on Facebook. A systematic method was proposed to aid in the data analysis including social network analysis, topic modeling, sentiment analysis, and inferential analysis. Social network analysis method was adopted to reveal the interaction patterns appearing in the groups, and topic modeling method was employed to uncover the discussion themes that users were concerned with in their daily lives. Sentiment analysis method helped analyze the emotional characteristics of the content that users expressed in the groups. Inferential analysis method was applied to compare the similarities and differences among different autism support groups found on Facebook. This study collected user-generated content from five sampled support groups (an awareness group, a treatment group, a parents group, a research group, and a local support group) on Facebook. Findings show that the discussion topics varied in different groups. Influential users in each Facebook support group were identified through the analysis of the interaction network. The results indicated that the influential users not only attracted more attention from other group members but also led the discussion topics in the group. In addition, it was examined that autism support groups on Facebook offered a supportive emotional atmosphere for group members. The findings of this study revealed the characteristics of user interactions and information exchanges in autism support groups on social media. Theoretically, the findings demonstrated the significance of social media for autism users. The unique implication of this study is to identify support groups on Facebook as a source of informational, social, and emotional support for autism-related users. The methodology applied in this study presented a systematic approach to evaluating the information exchange in health-related support groups on social media. Further, it investigated the potential role of technology in the social lives of autism-related users. The outcomes of this study can contribute to improving online intervention programs by highlighting effective communication approaches

    Autism and transition to work: a thematic analysis of service user experiences

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    Introduction This study investigates the experiences of individuals with autism spectrum conditions (ASC) as they experienced transition into employment in the UK. The high prevalence of ASC has led to increased social and economic pressures (Gerhardt & Lainer, 2010), with the estimated yearly cost to the UK for each individual at £90,000 (Knapp, Romeo & Beecham, 2007). Employment may help to reduce economic pressures, benefit individuals and society (Howlin, Alcock & Burkin, 2005). Individual gains in cognitive functioning (García-Villamisar & Hughes, 2007), quality of life and self-esteem (Eggleton et al., 1999) may be experienced. However, individuals with ASC tend to find transitioning to employment difficult, due to implicit characteristics associated with the condition (Berney, 2004). Transitions represent challenges to individuals’ social identity and self-concept, require behaviour change and may contribute to distress (Liddle, Carlson & McKenna, 2004). These factors may be exacerbated in individuals with ASC due to their difficulties with social and behaviour change processes (American Psychiatric Association [APA], 2010). Transition and employment support strategies have been shown to facilitate successful employment for individuals with ASC (Howlin et al., 2005). The National Institute for Health and Clinical Excellence ([NICE], 2012) propose how best to support people with ASC, based on the synthesis of available evidence. However, the evidence lacks in consideration of individuals’ experiences and psychological theories of support and transition. Considering these perspectives may facilitate service users to influence effective service provision, through disseminating their views and experiences of transition to work by means of a rigorous qualitative study. Method This study investigates the experiences of 10 participants with ASC during their transition to employment settings in the UK and aims to provide them with a platform to express their experiences and views of this process. An inductive thematic analysis methodology (Braun & Clarke, 2006) is used to explore semantic information obtained from retrospective interviews relating to the experiences of transition to work and identify frequent and salient themes within the data (Buetow, 2010). Results Analysis identified three main themes that were particularly salient and frequent for the interviewed participants: Diagnosis; comprised of subthemes ‘Access to support’, ‘Identifying with ASC’, ‘Other-understanding’ and ‘Delay in diagnosis’. Barriers to transition; comprised of ‘Socio-economics’, ‘Physical accessibility’ and ‘ASC characteristics’. Transition support; comprised of ‘Emotional needs’, ‘Clear guidance and honest feedback’, ‘Practical support’ and ‘Social integration’. Discussion Thematic analysis facilitated investigation into the experiences of 10 participants with ASC as they transitioned to work. Participants’ difficulties and needs were reflected in the existing evidence base and aims of current legislation and guidance, but short-comings in the delivery of these were also highlighted. In addition, a unique insight into both the positive and negative emotional impact of transition to work for individuals with ASC was obtained. Psychological models of support and transition are considered in relation to the experiences of transition and associated challenges to self-concept. Potential support measures for more effective and less distressing transition to work are discussed

    Asperger's Syndrome And Fiction - Autistic Worlds And Those Who Build Them

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    Do tangible, testable links exist between the autistic spectrum and creativity? How would such links work from the perspective of an author with Asperger's Syndrome? To what degree would autism mould the author's work, and how would it affect writing technique and style compared to neurotypical (non autistic spectrum authors)? Do these links provide a tangible advantage? Can an Asperger's author successfully engage a non-Asperger's readership? Has Asperger's become fashionable in fiction and if so what are the benefits/consequences? Can an “extraterrestrial stranded without an orientation manual”1 communicate ideas in a meaningful way to non-autistics? Asperger's Syndrome is a form of high functioning autism where those affected express a range of social, behavioural and perceptual traits which have no actual bearing on their level of intelligence. As an author with Asperger's my intention is to examine the degree to which my autism affects my writing technique and style compared to neurotypical (non autistic) creatives. Asperger's sufferers lack empathy and social skills, therefore creating situations a reader can empathise with is challenging. To an Asperger's other people are 'aliens'. If the characters and scenarios in my work are coloured by my difference, then it may be the difference itself which provides the hook for the reader. To what extent do Asperger's authors need to 'pretend to be normal' in order to engage a neurotypical reader, or to make their work generally marketable? Is there an argument that they shouldn't even try? With increasing diagnosis and better understanding of the autistic spectrum, the Asperger's limited but intense range of interests and ability to focus without human distraction might link in to creative excellence that has an appeal far beyond the boundaries of the autistic spectrum. The purpose of this thesis is to investigate whether claims of autistic links to creativity are more than heresay. I examine alleged positive evidence for these links, and see how this evidence ties in with my experience both as an Asperger's and an author, with particular regard to my decisions in crafting my novel The Ghost Land

    “More than a mask”: A multidimensional model of autistic women’s experience of camouflaging

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    Autistic individuals may engage in various strategies to better align with non-autistic social stereotypes; most commonly termed camouflaging. Previous research has suggested that autistic women are more likely to camouflage than autistic men. However, there is debate concerning the nature of any gender differences, how best to define and measure camouflaging and its impact on health and well-being. This study explores how nine autistic women conceptualise, experience and engage in camouflaging. A narrative approach is used to analyse the data, in particular, thematic analysis and the narrative tools of broadening, burrowing and restorying.  Four over-arching themes were generated from looking at the women’s stories. The first theme was “camouflaging as a multifaceted and individualised process”, which captured the breadth and variety of each participant's camouflaging repertoire. The subthemes included methods of camouflaging, awareness of camouflaging, and individualised process. The second theme was “camouflaging and relationships”, with the subthemes of camouflaging inhibiting and enabling relationships, camouflaging within close relationships, and authenticity versus intimacy. The third theme was “societal pressure”, which explored the effect of sociocultural factors on the participants' camouflaging. The subthemes included, pressure to conform to a non-autistic majority, camouflaging as protection, and interaction between gender and camouflaging. The final theme was “diagnosis and camouflaging”, with the subthemes of pre-diagnosis experience of camouflaging, diagnosis revealing and reframing camouflaging, restorying the past, and future camouflaging. The findings support viewing camouflaging within a multidimensional and intersectional frame, that acknowledges how co-morbidity, gender, ethnicity, age (and other identity factors) affect the type of adaptive repertoire individuals use and their experience of it. The dynamic nature of camouflaging, and the women’s relationship to it, is captured, including the impact of diagnosis. Considering camouflaging in this multidimensional way may help clinicians to better assess and support autistic people. Further research is needed to consider how factors such as co-morbidity and socio-cultural background may influence camouflaging and impact mental health

    From Perceiving To Achieving: Experiences Of An Adolescent With Autism Spectrum Disorder In A Summer Day Program

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    Literature describing the experiences of adolescents and their families with summer day-programs is scarce. This study sought to reveal such experiences from one individual participating in a summer program, HorseAbility, in which individuals with disabilities interact with each other through planned and self-directed activities, therapeutic riding, and activities associated with taking care of horses. Interviews were conducted with an adolescent diagnosed with Autism Spectrum Disorder, his parent, a staff member of the summer day program, and the therapeutic riding instructor. Observation data and personal journaling was also used for data collection mechanisms. Data sources were triangulated to provide a rich understanding of the case. The interviews were transcribed and coded using an inductive approach. Two major themes were identified including, perception is critical to adolescent experiences and the just right challenge’s role for adolescent engagement and memory building. Results suggest reinforcement of typical adolescent developmental challenges and the need for engagement opportunities based upon skill development. Suggestions for future program development are included to support occupational engagement

    Exploring Experiences of Friendship in Girls and Young Women with High Functioning Autism Spectrum Disorder

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    This item is only available electronically.There is an increasing amount of research focusing on the experiences of girls and young women with ASD, including HFASD, particularly in relation to their social interactions and friendships. However, there remains a lack of research considering the developmental aspects of friendships for this group, despite the fact that girls with ASD are known to experience difficulty in forming and maintaining friendships due to impaired social skills. Research shows that friendships increase in complexity over late childhood and adolescence, however the nature of this potential trajectory for girls and young women with ASD is unknown. Further, it is unclear whether differences in friendship complexity and experience over development may affect what support is most useful during certain developmental periods. This study aimed to explore the friendship experiences and social support needs of girls and young women with HFASD during two distinct developmental periods - childhood and adolescence. Fourteen participants (seven young women with HFASD and seven parents) were interviewed. Data were analysed using thematic analysis, and the results of the two participant groups were triangulated. Results indicated that older girls with HFASD experience unique friendship and social interaction challenges in adolescence and thus require more tailored support to meet those needs. Further support for social skill development and transitions in schools is also needed, as are social groups which address specific needs of girls with HFASD. Future research should look to explore more developmentally appropriate support options for girls with HFASD during childhood and adolescence.Thesis (B.PsychSc(Hons)) -- University of Adelaide, School of Psychology, 201

    Transition to secondary school by children with special educational needs

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    The last 40 years have witnessed huge changes in the educational experiences of children with Special Educational Needs (SEN), with increased emphasis on inclusive approaches to meeting their needs. This has been reflected in international agreements, also in UK Government legislation and reports during this period. Increasingly, pupils with SEN were educated in mainstream schools and so required to make a transition between schools at age 11. Successful transition from primary to secondary education is important for later wellbeing and attainment (West et al 2010). Pupils with SEN face increased demands as they move from spending most of the day with a single class teacher in their primary school to the organisational and relationship complexities of needing to work with several different adults during the week in the secondary setting. This research investigated the experiences of children with SEN statements as they made the potentially difficult transition from mainstream primary to mainstream secondary school. It explored those social, academic and personal organisation matters often mentioned by children as of concern to them at time of transition. A largely qualitative approach was adopted, exploring the views of children, parents and school staff about this process and the approaches taken by mainstream schools in an English Local Authority to facilitate the transition experience for the children involved. Evidence was collected through questionnaires and interviews, and analysed for purposes of this research with the use of vignettes. It was found that the children interviewed looked forward with a mixture of excitement and concern. Most optimism was expressed about the prospect of enhanced opportunities in sport, science and school lunch! There were three broad areas of concern; social concerns ranging from making new friendships to fear of bullying; academic concerns relating to the anticipated increased amount/complexity of the work and decreased support for their specific difficulties; and worries about personal organisation in a larger school with different subjects each requiring specific materials. The eight primary and three secondary schools visited during this research all made arrangements to introduce children to their new school in advance of transfer, with additional activities for children with SEN. Post-transition interviews with the remaining seven participants demonstrated that transition proceeded smoothly, and that any concerns expressed in year 6 were unfounded. The original contribution of this longitudinal research has been to demonstrate the difference between participants' pre-transition expectations and eventual reality, also to ascertain what features participants identified as the most effective in facilitating transition, for a sample of pupils with widely varying SEN

    The \u27Affected\u27 Post-Preimplantation Genetic Diagnosis Embryo

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    The meaning of health is constructed from a variety of perspectives, including biomedical, social and political, and in a variety of sites, including human bodies and natural environments. In this chapter we suggest that the human embryo is one such site. At first glance the in vitro embryo is not an obvious location from which to examine such constructions; however, we contend that an increasing focus on biomedical determinations of the health of the human embryo (Mykitiuk and· Nisker, 2008b; Van Wagner, Mykitiuk and Nisker, 2008) is significant not only in the application to human embryos themselves, but also in terms of our broader understanding of health in relation to existing adults and children

    The \u27Affected\u27 Post-Preimplantation Genetic Diagnosis Embryo

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    The meaning of health is constructed from a variety of perspectives, including biomedical, social and political, and in a variety of sites, including human bodies and natural environments. In this chapter we suggest that the human embryo is one such site. At first glance the in vitro embryo is not an obvious location from which to examine such constructions; however, we contend that an increasing focus on biomedical determinations of the health of the human embryo (Mykitiuk and· Nisker, 2008b; Van Wagner, Mykitiuk and Nisker, 2008) is significant not only in the application to human embryos themselves, but also in terms of our broader understanding of health in relation to existing adults and children
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