Making the familiar strange and making the strange familiar: understanding Korean children’s experiences of living with an autistic sibling

‘You are labelled by your children’s disability’ – A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom

“…Drawing on Goffman's sociological concept of 'courtesy stigma', Gray argues that parents' stigmatisation arises as a result of their association with, and responsibility for, their child with autism (Gray 1993). Other studies have demonstrated how cultural factors influence the nature and experience of stigma related to autism internationally (Mak and Kwok 2010;Hwang and Charnley 2010;Burkett et al 2015;Shaked and Bilu 2006). However, despite the benefit of using an appropriate theoretical model in qualitative research on complex subjects (Reeves et al 2008), much of this research is either atheoretical, or uses theories unrelated to stigma (Burkett et al 2015).…”

Are Individuals With Disabilities and Their Families “Resilient”? Deconstructing and Recasting a Well-Intended Concept

“…Several authors (King et al, 2009;Knestricht & Kuchey, 2009;Retzlaff, 2007) also point to the resilient family's adoption of a proactive stance, whereas others (Bellin et al, 2008;Crabtree, 2007;Garwick, Kohrman, Titus, Wolman, & Blum, 1999;Mophosho et al, 2009;Poehlmann, Clements, Abbeduto, & Farsad, 2005;Retzlaff, 2007) note families who draw on religious or spiritual belief systems. Other authors call attention to the place of mourning, distress, suffering, anxiety, vulnerability, or uncertainty (Bellin et al, 2008;Hwang & Charnley, 2010;Poehlmann et al, 2005;Retzlaff, 2007) in families' experiences; however, these authors tend to uncritically attribute such processes and features to less-than-resilient families or to describe them primarily as opportunities to make positive meaning. Most of these qualitative examinations of resilience in families with members with disabilities framed resilience in terms of family competence, a family's fulfillment of socially and culturally valued roles, and a family's display of socially and culturally valued modes of behavior.…”

“…In emerging qualitative work, resilience is seen to involve family constructions of positive meaning of experiences (e.g., an appreciation of life's ''daily gifts,'' lessons learned, and contributions of this family member to the family as a whole). A number of researchers (Bellin et al, 2008;Hwang & Charnley, 2010;King, Baxter, Rosenbaum, Zwaigenbaum, & Bates, 2009;Knestricht & Kuchey, 2009;Mophosho, Widdows, & Gomez, 2009;Retzlaff, 2007) note the tendency for families to ''normalize'' the child or the situation. Several authors (King et al, 2009;Knestricht & Kuchey, 2009;Retzlaff, 2007) also point to the resilient family's adoption of a proactive stance, whereas others (Bellin et al, 2008;Crabtree, 2007;Garwick, Kohrman, Titus, Wolman, & Blum, 1999;Mophosho et al, 2009;Poehlmann, Clements, Abbeduto, & Farsad, 2005;Retzlaff, 2007) note families who draw on religious or spiritual belief systems.…”

Snapshots reflecting the lives of siblings of children with autism spectrum disorders

“…; Hema et al . ; Hwang & Charnley ; Sage & Jegatheesan ). Another appropriate method is photo elicitation, which generates discussion about photographs and provides insights into children's lives (Einarsdottir ; Banister & Booth ; Newman et al .…”