Article

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

School of Psychology, Bangor University, Brigantia Building, Penrallt Road, Bangor LL57 2AS, Wales, UK. g.m.griffi
Journal of Intellectual & Developmental Disability (Impact Factor: 1.02). 08/2012; 37(3):237-47. DOI: 10.3109/13668250.2012.701729
Source: PubMed

ABSTRACT

The experiences of older parents of adults with Asperger syndrome have not been explored in the research literature.
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).
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.
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.

Download full-text

Full-text

Available from: Gemma Maria Griffith
    • "Even if families can afford services, barriers to accessing services may present as considerable impediments, particularly as youth age (Douma et al., 2006; Weiss and Lunsky, 2010). Certainly, parents report a lack of available appropriate services and difficulty accessing information about those services (Eaves and Ho, 2008; Griffith et al., 2012; Hare et al., 2004). However, no one has studied how systemic variables relate to parent self-efficacy. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Many parents of adolescents and adults with autism spectrum disorder experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic, and clinical need variables as they relate to parents' experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12-25 years of age. Results suggest that parent self-efficacy is related to a number of variables and not simply a child's clinical situation, including child age, parent immigrant status, barriers to service access, and caregiver burden. Given the crucial role that parents often play in the lives of individuals with autism spectrum disorder across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children. © The Author(s) 2015.
    No preview · Article · May 2015 · Autism
    • "Even if families can afford services, barriers to accessing services may present as considerable impediments, particularly as youth age (Douma et al., 2006; Weiss and Lunsky, 2010). Certainly, parents report a lack of available appropriate services and difficulty accessing information about those services (Eaves and Ho, 2008; Griffith et al., 2012; Hare et al., 2004). However, no one has studied how systemic variables relate to parent self-efficacy. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Bullying victimization is commonly associated with anxiety among individuals with and without Autism Spectrum Disorder (ASD), and both bullying victimization and anxiety are more prevalent among youth with ASD than in the general population. We explored individual and contextual factors that relate to anxiety in adolescents and young adults with ASD who also experience bullying victimization. Participants included 101 mothers of adolescents and young adults diagnosed with ASD. Hierarchical multiple regression analyses were conducted to investigate the relationship between bullying victimization and anxiety in children with ASD, as well as parenting stress as a potential moderator of that relationship. Findings indicate that parenting stress moderates the association between bullying victimization and anxiety. The severity of anxiety was most strongly associated with bullying victimization when mothers reported high levels of stress. Implications for interventions that assist parents with coping and address bullying victimization are discussed. Autism Res 2015. © 2015 International Society for Autism Research, Wiley Periodicals, Inc. © 2015 International Society for Autism Research, Wiley Periodicals, Inc.
    No preview · Article · May 2015 · Autism Research
    • "Even if families can afford services, barriers to accessing services may present as considerable impediments, particularly as youth age (Douma et al., 2006; Weiss and Lunsky, 2010). Certainly, parents report a lack of available appropriate services and difficulty accessing information about those services (Eaves and Ho, 2008; Griffith et al., 2012; Hare et al., 2004). However, no one has studied how systemic variables relate to parent self-efficacy. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Background: Research consistently indicates that parents of children with Autism Spectrum Disorders (ASD) experience considerable stress and burden related to caring for their child (Schieve et al., 2007). A lack of available and accessible services has been shown to cause significant distress for families, which at times can lead to a full-blown crisis (White, McMorris, Weiss & Lunsky, in press). Past research has yielded mixed results on the role that service use plays in preventing or mitigating the effects of caregiver burden and family distress (Gray & Holden, 1992; White & Hastings, 2004). No studies have examined the intermediary role that parents’ service efficacy (i.e., knowledge of the service system and perceived ability to effectively access services) may have on the relationship between family distress and caregiver burden. Objectives: The current investigation aims to examine the relationship between levels of family distress and caregiver burden. In addition, the study aims to examine the role of caregivers’ knowledge of the service system and ability to effectively access appropriate services, within the relationship between family distress and caregiver burden. Methods: As part of a larger study examining service utilization in adolescents and adults with ASD, 233 caregivers completed an online survey. Caregivers (94% mothers) were 33 to 79 years of age (M=48.06, SD=7.32) and children with ASD (80% male) ranged in age from 6 to 56 (M=17.85, SD=6.15). Caregiver ratings of family distress were measured with the Brief Family Distress Scale (Weiss & Lunsky, 2011), and caregiver burden was measured with the Revised Caregiver Appraisal Scale (Burden subscale; Lawton, Moss, Hoffman & Perkinson, 2000). To assess service efficacy, caregivers were asked to rate their perceived knowledge of the service system and ability to access appropriate services, on a 5-point Likert scale, ranging from 1 (disagree a lot) to 5 (agree a lot). Results: Correlation analyses revealed significant positive associations between family distress and caregiver burden (r=.51, p<.01), and negative correlations between service efficacy and caregiver burden (r=-.22, p<.01). Regression analyses were used to test whether service efficacy moderated the relationship between family distress and caregiver burden. Analyses revealed a significant interaction between family distress and service efficacy (Fchange(1, 228)=10.52, p<.01), such that when families were distressed, knowledge of the service system and ability to access appropriate services ameliorated caregiver burden. Conclusions: These findings suggest that parents with greater perceptions of service efficacy may experience more positive caregiver and family outcomes. Specifically, parents’ knowledge of the service system and ability to access appropriate services may lessen the impact that family distress may have on caregiver burden. The present findings contribute to our knowledge of the importance of service efficacy, as well as expand our understanding of distress or crisis experiences for families with a child with ASD.
    No preview · Conference Paper · May 2012
Show more