Clothes, Sensory Experiences and Autism: Is Wearing the Right Fabric Important?

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.

'Love makes me feel good inside and my heart is fixed': What adults with intellectual disabilities have to say about love and relationships.

BACKGROUND: Adults with intellectual disabilities have historically been hindered, rather than supported, in their desire to form loving relationships. This paper sought to explore with them what kinds of support they wanted in the 21st Century. METHOD: Semi-structured in-depth interviews were conducted with 40 adults with intellectual disabilities in the United Kingdom. RESULTS: Participants placed a high value on having a partner and being supported to maintain and develop a loving relationship. The factors which constrained them in achieving this included a lack of social opportunities, barriers created by social care services and limits on them exercising autonomy. Facilitating factors included access to specialist dating agencies, strong family and staff support and opportunities to learn about relationships. CONCLUSIONS: The importance of a loving relationship as a source of pleasure and meaning in the lives of adults with intellectual disabilities who are often disadvantaged in many other spheres of life is emphasised.

Social networks and people with intellectual disabilities: A systematic review.

BACKGROUND: Despite the importance of social networks for health and well-being, relatively little is known about the ways in which adults with intellectual disabilities in the U.K. experience their social networks. METHOD: A systematic review was completed to identify research focused on the social networks of adults with intellectual disabilities. Studies published from 1990 to 2019 were identified. Studies were thematically analysed. RESULTS: Quantitative, qualitative and mixed methods studies were analysed to identify key factors influencing social networks. Experiences of people with intellectual disabilities identified themes of identity, powerlessness, inclusion, family and support. These themes are discussed with reference to theories of stigma and normalisation. CONCLUSIONS: Stigma and normalisation can be used to better understand the needs, desires and dreams of people with intellectual disabilities for ordinary relationships, from which they are regularly excluded. Implications for policy and practice are discussed in relation to building and repairing often spoiled identities.

Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.

BACKGROUND: Population-based data are presented on the nature of dying in intellectual disability services. METHODS: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. RESULTS: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. CONCLUSION: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

Valuing e-inclusion: Social media and the social networks of adolescents with intellectual disability.

BACKGROUND: Social media is a growing phenomenon, yet people with intellectual disability (ID) may not experience comparable access to this communication technology. Adolescents with ID may benefit from e-inclusion, especially as individuals with ID are at risk of having smaller social networks. MATERIALS AND METHODS: The Social Network Guide was adapted to measure social media usage and used to examine the interpersonal relationships of adolescents with and without ID. RESULTS: Adolescents with ID held smaller social networks with less developed informal relationships. However, friendship quality was comparable or superior to typically developing peers. Adolescents with ID interacted with a smaller percentage of contacts using social media. Social media use was predictive of the number of reported friendships and did not significantly predict critical comments. CONCLUSIONS: Findings suggest that adolescents with ID have comparable access to social media but use these sites to interact with a smaller number of social contacts.

Specialist hospital treatment and care as reported by children with intellectual disabilities and a cleft lip and/or palate, their parents and healthcare professionals.

BACKGROUND: Research into hospital treatment and care of children with intellectual disabilities is extremely limited, but available literature points to difficulties. Some children have a co-occurring condition alongside an intellectual disability which requires ongoing treatment, such as a cleft lip/palate. To date, their experiences remain untapped. METHOD: Semi-structured interviews with 23 participants; five children with intellectual disabilities (aged 11-16), their parents (n = 9) and nine healthcare professionals working in cleft care. Thematic analysis determined patterns across the data. RESULTS: Three key themes were found: struggles (stress and distress, and power imbalance), tensions (perceived levels of choice and control in decision making, lack of training around intellectual disability assumptions and jargon) and good practice (appropriate communication and information, and tailored treatment). CONCLUSION: Good practice was evident, but was ad hoc. Individualized treatment and communication based upon children's needs are required as is further investigation into general anaesthetic induction for children with intellectual disabilities.

Experiences of going to court: Witnesses with intellectual disabilities and their carers speak up.

BACKGROUND: People with intellectual disabilities are more vulnerable to sexual abuse and are more disadvantaged in the criminal justice system than the general population. However, little is known about the experiences of people with intellectual disabilities who have allegedly been victims of sexual abuse and also been witnesses in court. MATERIALS AND METHODS: This study used semi-structured interviews and a Grounded Theory approach to examine the experiences of four people with intellectual disabilities and four carers/supporters who had all attended trials. RESULTS: Findings showed that after the traumatic incident of abuse, a court experience could become a secondary source of trauma. Experience of this trauma was dependent on the quality and quantity of support people received and the understanding of intellectual disabilities amongst the legal participants. CONCLUSION: The findings argue for better training for legal participants who are in contact with vulnerable witnesses and better support structures for alleged victims.

End-of-life care in intellectual disability: a retrospective cross-sectional study.

BACKGROUND: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown. AIM: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population. DESIGN: Nationwide population-based postbereavement survey. PARTICIPANTS: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths. RESULTS: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population. CONCLUSIONS: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.

Social networks of adults with an intellectual disability from South Asian and White communities in the United Kingdom: A comparison.

BACKGROUND: Little research exists comparing the social networks of people with intellectual disability (ID) from South Asian and White backgrounds. This UK study reports on the barriers that South Asian people with intellectual disability face in relation to social inclusion compared to their White counterparts. MATERIALS AND METHODS: A mixed-methods research design was adopted to explore the social lives of 27 men (15 White; 12 South Asian) and 20 women (10 White; 10 South Asian with intellectual disability). Descriptive and parametric tests were used to analyse the quantitative data. RESULTS: The average network size of the whole group was 32 members. South Asian participants had more family members whilst White participants had more service users and staff in their networks; 96% network members from White intellectual disability group were also of White background, whilst the South Asian group had mixed ethnic network members. CONCLUSIONS: Social networks of individuals with intellectual disability in this study were found to be larger overall in comparison with previous studies, whilst network structure differed between the White and South Asian population. These differences have implications relating to future service planning and appropriateness of available facilities.

People with intellectual disabilities at the end of their lives: The case for specialist care?

BACKGROUND: People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end-of-life care. This study aimed to explore a specialist intellectual disability service for older people who are dying and how it related to their quality of life and to costs associated with care provided. METHOD: Data were collected for nine residents and 15 staff members of the specialist service. A single case study design with mixed methods including observations, interviews, standardized questionnaires and costs analysis was utilized. RESULTS: We found positive results regarding overall quality of life, although individuals had limited social networks. Placement fees paid by local health trusts and social services departments were slightly higher than the estimated cost of care reflecting good financial management by a small voluntary sector organization. CONCLUSION: Whilst the philosophical arguments around "specialist" care persist, this service fills a gap in intellectual disability care provision.

"I'm not being rude, I'd want somebody normal": Adolescents' Perception of their Peers with Tourette's Syndrome: an Exploratory Study.

Tourette's syndrome (TS) is a highly stigmatised condition, and typically developing adolescents' motives and reasons for excluding individuals with TS have not been examined. The aim of the study was to understand how TS is conceptualised by adolescents and explore how individuals with TS are perceived by their typically developing peers. Free text writing and focus groups were used to elicit the views of twenty-two year ten students from a secondary school in South East England. Grounded theory was used to develop an analytical framework. Participants' understanding about the condition was construed from misconceptions, unfamiliarity and unanswered questions. Adolescents who conceived TS as a condition beyond the individual's control perceived their peers as being deprived of agency and strength and as straying from the boundaries of normalcy. People with TS were viewed as individuals deserving pity, and in need of support. Although participants maintained they had feelings of social politeness towards those with TS, they would avoid initiating meaningful social relationships with them due to fear of 'social contamination'. Intergroup anxiety would also inhibit a close degree of social contact. Participants that viewed those with TS as responsible for their condition expressed a plenary desire for social distance. However, these behavioural intentions were not limited to adolescents that elicited inferences of responsibility to people with TS, indicating that attributional models of stigmatisation may be of secondary importance in the case of TS. Implications for interventions to improve school belonging among youth with TS are discussed.

'Disability Means, um, Dysfunctioning People': A Qualitative Analysis of the Meaning and Experience of Disability among Adults with Intellectual Disabilities.

BACKGROUND: There has been little qualitative analysis of the experience of stigma, social comparisons and conception of identity among adults with intellectual disabilities (ID). This study aimed to develop an understanding of how adults with intellectual disabilities experience their own disability, and any implications relating to self-esteem, stigma and social interactions. MATERIALS AND METHODS: Fifteen adults with intellectual disabilities were interviewed using semi-structured, open-ended questions regarding disability, social interactions and self-esteem. Interviews were analysed independently by two researchers using interpretive phenomenological analysis. RESULTS: Three major themes emerged during analysis, exploring pressure on participants to behave in a socially normative way, tendency to produce personal definitions of disability and consistently limited knowledge of and discomfort around common disability terminology. CONCLUSIONS: Participants' clearly experienced feelings of difference, despite a lack of articulation. Limited understanding of both terminology and conceptualization of disability status could negatively impact self-esteem, person-centred actions and political movement.

An Investigation into the use of the Deprivation of Liberty Safeguards with People with Intellectual Disabilities.

BACKGROUND: This small, qualitative study sought to develop a richer understanding of the way in which the deprivation of liberty safeguards (DOLS) were being used for people with intellectual disabilities. It is important to note that this study was completed prior to the changes resulting from the P v Cheshire West and Chester Council judgement. METHOD: Six DOLS cases were identified and two people involved in each case were interviewed (care home managers, key workers, social workers, specialist nurses or psychologists), using semi-structured interviews. The data were analysed using grounded theory techniques. RESULTS: The interviewees described DOLS as providing a framework leading to positive outcomes for the people they supported, in some cases avoiding inpatient stays. However, they had a number of concerns including lack of knowledge and training, potential under use of DOLS and disappointment with case law. CONCLUSION: Overall, these findings are encouraging in regard to the specific individuals for whom DOLS applications were made; however, they also highlight the need for a stronger agenda regarding wider dissemination of information, and training about DOLS, as well as some reform.

Stigma in youth with Tourette's syndrome: a systematic review and synthesis.

Tourette's syndrome (TS) is a childhood onset neurodevelopmental disorder, characterised by tics. To our knowledge, no systematic reviews exist which focus on examining the body of literature on stigma in association with children and adolescents with TS. The aim of the article is to provide a review of the existing research on (1) social stigma in relation to children and adolescents with TS, (2) self-stigma and (3) courtesy stigma in family members of youth with TS. Three electronic databases were searched: PsycINFO, PubMed and Web of Science. Seventeen empirical studies met the inclusion criteria. In relation to social stigma in rating their own beliefs and behavioural intentions, youth who did not have TS showed an unfavourable attitude towards individuals with TS in comparison to typically developing peers. Meanwhile, in their own narratives about their lives, young people with TS themselves described some form of devaluation from others as a response to their disorder. Self-degrading comments were denoted in a number of studies in which the children pointed out stereotypical views that they had adopted about themselves. Finally, as regards courtesy stigma, parents expressed guilt in relation to their children's condition and social alienation as a result of the disorder. Surprisingly, however, there is not one study that focuses primarily on stigma in relation to TS and further studies that examine the subject from the perspective of both the 'stigmatiser' and the recipient of stigma are warranted.

The road barely taken: funerals, and people with intellectual disabilities.

BACKGROUND: The topic of funerals within the life cycle approach to care in the U.K. remains largely absent. This small exploratory study sought to investigate how practitioners deal with this sensitive issue and to capture the views of older people with and without intellectual disabilities about funerals. METHODS: A semi-structured questionnaire was administered to 40 service managers, and five focus groups for 26 people with and without intellectual disabilities were facilitated. Questionnaires were subjected to thematic content analysis; focus group data were analysed using a grounded theory approach. RESULTS: Managers demonstrated confusion about organizing the funerals of people with intellectual disabilities. Few differences existed between the views of people with and without intellectual disabilities in relation to funerals and a number of core themes were identified including the lack of opportunities to attend funerals. CONCLUSIONS: More thought and practical interventions are needed to support vulnerable people to participate in the funerals of people they know.

Good friends are hard to find? The social networks of people with mental illness 12 years after deinstitutionalisation.

BACKGROUND: While community care is now well established in England, the development and maintenance of social networks of people with long-term mental illness remains a major challenge to services. AIMS: To investigate the size of the social networks of people with long-term mental illness and the types of social support they receive in relation to their age and accommodation. Sample Thirty-nine men and 46 women (mean age: 61 years; range: 38-88). Forty nine (60%) were 65 years or under and 32 (40%) were over 65. METHODS: Participants were interviewed using the Social Network Guide. Comparisons were made using generalised linear modelling. RESULTS: Social networks (median 19; range 2-85) were generally larger than those reported in previous studies. Older residents (over 65 years) had closer ties than younger residents. Congregate types of community settings were relatively devoid of social supports. CONCLUSION: Appropriate activities and social contexts are still needed to facilitate the social networks of people with mental illness, in particular, for those aged under 65 years.

Reflections on a young offenders institution: communication--a need, a want, a right.

In this article, it is demonstrated that a dichotomy exists between wider societal movements to develop communication between individuals and among institutions and management practices within a young offenders institution. The principle aim of the article is to illustrate how young offenders are being systematically denied the opportunity to socially interact with others at an appropriate level. The significance of social exchange for these prisoners and how they achieve this is highlighted. The article concludes by suggesting some recommendations in relation to communication within young offenders institutions.

Social impairment in the "Care in the Community" cohort: the effect of deinstitutionalization and changes over time in the community.

This paper presents data from a longitudinal collaborative study of The Care in the Community Sample (Cambrdige, Hayes, Knapp, Gould, & Fenyo, 1994; Cambridge et al., 2001; Knapp et al., 1992). The aim of the study was to investigate how social impairment changes are related to the move from institutional to community care using some preliminary analysis of the above data. A measure of social impairment using the Skills and Behavior Interview from the most recent follow-up of this cohort was found to be consistent with Wing's definition of social impairment, when applied to the cohort 12 years after deinsitutionalization. This measure was then used to retrospectively identify social impairment in the same sample (of approximately 250 people) at baseline (in the institution), at 1 year and at 5 years in the community. Prevalence data pointed to high levels of social impairment in the sample (50.1%) in institutions but the decrease to 39.8% after 1 year in the community was not significant (although conversation and social mixing and initiation of conversation and social interaction did improve over time). Once in the community, social impairment in general did not change over time, although there was a significant decrease in conversation and social mixing, non-verbal communication and initiation of conversation and social interaction. These results are compared to other research findings and the implications and limitations of the study discussed.