Research suggests that adults with Tourette's syndrome (TS) may face unique challenges in their everyday life due to their condition. To date, however, only a limited number of studies exist in relation to their life experiences and conception of identity. This study, which we believe to be the first of its kind, aimed to expand the literature by 'giving voice' to this population, and to evaluate the social and personal cost of living with TS during adulthood. Semi-structured interviews were conducted with sixteen adults with Tourette's that focused on how they negotiated their identity and experiences. Transcripts of recorded interviews were subjected to interpretative phenomenological analysis. Three superordinate themes emerged: a) "Incorporating Tourette's syndrome into self" revealed two divergent ways in which TS was merged into the participants' selfidentity, either by reconciling with it or fighting against it; b) "Interpersonal interaction" covered issues relating to negative and supportive ties as a result of their condition; and finally, c) "The solitude of Tourette's syndrome" described the loneliness that stems from the condition. The current findings suggest that the experience of the participants is a multidimensional one related to self-identity threat, social withdraw, and self-stigma. Implications for clinical practice on the topic are discussed.
Tactile defensiveness in autistic individuals is the least investigated sensory modality. The current multi-component, explorative study aimed to understand the experiences of ten autistic adults regarding tactile defensiveness and fabrics, using semi-structured, one-to-one interviews. Participants were asked to discuss the effects of seven provided samples of fabrics and were also asked to bring their ‘favourite’ fabric (s) and express their thoughts about their choices. Using Interpretative Phenomenological Analysis and Content Analysis, the findings showed that some fabrics can impact individuals’ reported wellbeing. Participants’ experiences with several stimuli appeared to have helped them implement coping strategies. By understanding tactile defensiveness, society could move towards increasing autism-friendly approaches with appropriate fabrics. Recommendations for future research, policy and practice are also discussed.
Social media can lead to rejection, cyber-bullying victimisation, and cyber-aggression, and these experiences are not fully understood as experienced by autistic adults. To investigate this, 78 autistic adults completed self-report measures of social media use, cyber-bullying victimisation, cyber-aggression, and self-esteem. High levels of social media use were found to be associated with an increased risk of cyber-victimisation; whereas self-esteem was positively correlated with feelings of belonging to an online community and negatively correlated with feelings of being ignored on social network sites and chat rooms. Future studies are needed to further investigate the experience of cyber-bullying victimisation of autistic adults.
This study explores the impact of mental capacity in relation to breast screening for women with intellectual disabilities in the UK. Participation in breast screening is considerably lower for women with intellectual disabilities compared to the general population. Barriers to screening include poor mobility and behavioural difficulties. There is currently no research which primarily explores the relationship between mental capacity and breast screening for this group of individuals. This paper presents the results of a cross‐sectional survey of 131 women with intellectual disabilities supported by eight Social Care Providers within England and Wales. The data were collected between January 2017 and July 2017. The current research explores the decision‐making process surrounding breast screening, considering the impact of associated risk factors during this process. Participants completed a specifically created survey addressing the aforementioned issues. The results indicated that women who lacked capacity, were less likely to engage in breast screening. It was also demonstrated that the process outlined in the Mental Capacity Act (MCA; 2005) was not always followed; women were not routinely assessed if there were doubts regarding their decision‐making ability around breast screening and best interest meetings (BIM) were not always held if the person lacked capacity. In order to be able to generalise the current findings, further research is needed to gain a broader understanding of how professionals make decisions around breast screening for women with intellectual disabilities in case the individuals are unable to decide this independently.
More training is needed for both the Police and health and social care professionals specifically in domestic violence as it affects women with intellectual disabilities.
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