The perceptions and experiences of adolescent siblings who have a brother with autism spectrum disorder.

BACKGROUND: There is a dearth of research on the perspectives of adolescent siblings growing up with a brother or sister with an autism spectrum disorder (ASD). METHOD: Semistructured interviews were used to elicit the perceptions and experiences of 12 typically developing adolescents with a brother with an ASD. Interpretative phenomenological analysis was used. RESULTS: The data analysis of the siblings' perceptions yielded 6 themes: (a) difficulties and negative impact of their brother's condition on themselves and their family, (b) how others' reactions to their brother negatively affected them as siblings, (c) how their histories with their brothers contextualised their present circumstances, (d) the varying degrees of acceptance and tolerance towards their brothers, (e) positive perceptions and experiences with their brothers, and (f) their thoughts and worries about the future. CONCLUSIONS: The main implications are for supports to adolescent siblings by helping them to develop skills in managing others' reactions and openly discussing concerns about their brother's future.

"We are all there silently coping." The hidden experiences of parents of adults with Asperger syndrome.

BACKGROUND: The experiences of older parents of adults with Asperger syndrome have not been explored in the research literature. METHOD: Four families who had middle-aged offspring with Asperger syndrome were interviewed (3 mothers and 1 couple), and the interviews were analysed using interpretative phenomenological analysis (IPA). RESULTS: Six themes emerged from the analysis: (a) providers of "hidden" support, (b) role of advocate, (c) social isolation, (d) intrafamilial relationships, (e) support for parents, and (f) future concerns. CONCLUSIONS: The findings of this study offer insight into the experience of parents of adult sons with Asperger syndrome. Implications for future support interventions and research are suggested.

'I just don't fit anywhere': support experiences and future support needs of individuals with Asperger syndrome in middle adulthood.

The experiences of individuals in middle adulthood with Asperger syndrome have been the subject of little previous research, especially in terms of their experience of support services. In the present research, 11 adults with Asperger syndrome were interviewed. Interpretative phenomenological analysis (IPA) was used to interpret the interviews. Four themes emerged from the analysis: living with Asperger syndrome; employment issues; experiences with mainstream support; and future steps towards supporting adults with Asperger syndrome. The findings highlighted the anxiety, depression, and communication difficulties that people with Asperger syndrome may experience. Much of the available support is perceived as unsuitable for individuals with Asperger syndrome. All participants wanted to remain as independent as possible, and believed an individualized approach to support would be greatly beneficial. Recommendations are made for future practice to help support adults with Asperger syndrome.

"You have to sit and explain it all, and explain yourself." Mothers' experiences of support services for their offspring with a rare genetic intellectual disability syndrome.

The experiences of mothers of adult offspring with Angelman, Cornelia de Lange, or Cri du Chat syndrome have not been previously explored in research. The current study focuses on experiences with social and medical services and the impact the rareness of an adult offspring's syndrome has on the experiences of mothers. Eight mothers of adults with Angelman, Cornelia de Lange, or Cri du Chat syndrome were interviewed. Thematic Content Analysis was used to interpret the interviews. Four themes emerged from the analysis: (i) The rarity of their offspring's syndrome, (ii) Uneven medical and social care service provision, (iii) The inertia of social care services, and (iv) Mothers as advocates. Mothers felt that the rareness of their offspring's syndrome did not affect experiences with social care services, but did affect access to medical services and some aspects of day-to-day living. Accessing appropriate social care services was reported to be a lengthy and complex process. These data may help inform care service providers about how best to support adults with rare genetic syndromes and their families.

Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autism.

Mothers of children with Down syndrome, autism, and mixed etiology intellectual disabilities, matched on child age, gender, and communication skills (n = 19 in each group) completed measures of their child's adaptive and problem behaviors, their own parenting stress, and positive perceptions of their child. Children with autism were rated as having more problem behaviors and lower levels of social competence than children with Down syndrome and mixed etiology intellectual disabilities. Mothers of children with autism scored lower on positive perceptions of their child, and higher on stress than the other two groups. After selecting closely matched groups, we found several group differences in child behavior but little evidence of group differences in maternal outcomes.

Emotional and behavioural adjustment in siblings of children with intellectual disability with and without autism.

Siblings of children with autism may be at greater risk for psychological problems than siblings of children with another disability or of typically developing (TD) children. However, it is difficult to establish whether autism or the presence of intellectual disability (ID) explains the findings in previous research. Mothers rated the emotional and behavioural adjustment of siblings of children with ID with (N = 25) or without (N = 24) autism. Data were also available 18 months later for siblings of children with autism and ID (N = 15). Siblings of children with autism and ID had more emotional problems compared with siblings of children with ID only and with normative data. Three variables were pertinent: increasing age of the child with autism, having a brother with autism, and being younger than the child with autism. Behavioural and emotional difficulties of siblings of children with autism and ID were relatively stable over 18 months.

Interactive training for active support: perspectives from staff.

BACKGROUND: In this study, we describe the experience of participating in interactive training (IT) for active support (AS). Staff (N = 58) working with adults with an intellectual disability (ID) received IT on providing effective assistance for participation in daily activities. METHOD: Semi-structured interviews were conducted with staff (N = 37) on their experience of IT, the way it affected their work, and their views on the implementation of AS. RESULTS: High levels of satisfaction with IT were reported. Most staff identified at least one skill learnt during IT that they were still using 8 months later. No clear and consistent picture of AS implementation emerged across the service; staff identified a number of barriers, with lack of managerial support as the most significant. CONCLUSIONS: Interactive training can directly affect staff behaviour and has the advantage of being positively perceived by staff. However IT alone cannot ensure successful AS implementation, which is affected by a number of other factors, such as managerial support and input, residents' challenging behaviours, and staffing levels.