“It’s hard when people try and get their kids away from Cole”: Stories of (in)dignity from a family experiencing autism

  • Author / Creator
    Boyd, Kassi A.
  • Dignity encompasses feelings of self-respect and worth (Nordenfelt, 2004). These feelings can be shattered by the cruel acts of others, resulting in humiliation or embarrassment (Johnston, Goodwin, & Leo, 2015). It has been argued that children with autism experience increased rates of indignity over other children through physical, verbal, and relational forms of bullying, often in public settings (Goodwin, Johnston, & Causgrove Dunn, 2014; Ryan, 2005; Schroeder, Cappadocia, Bebko, Pepler, & Weiss, 2014). Feelings of being ‘lesser than’ also extend to family members, particularly in public settings (Ryan, 2005).This study was conducted to gain an understanding of how a family with a child with autism experienced dignity during community-based family leisure. The experiences of three generations from one family were captured; Mom, Dad, Grandma, and Great-Grandma. An interpretative phenomenological analysis case study was completed (Smith, Flowers, & Larkin, 2009; Stake, 2005). Data were collected through two semi-structured, audio-recorded interviews, conversational interviews, and researcher field notes. Interviews were transcribed verbatim and all data were subjected to thematic analysis (Smith et al., 2009). The conceptual framework of relational ethics (Bergum & Dossetor, 2005) facilitated the interpretation of the findings. The results are organized to reflect the experiences of the four family members. The themes were: (a) living under a microscope, (b) screw your microscope; we’re going anyway, (c) stories of belonging, and (d) feeling overlooked; lamenting the future. The family members experienced dignity on different levels during community-based family leisure. Dignity was cyclically maintained, temporarily lost, and regained through interactions with community environments. Through their refusal to acquiesce to exclusionary actions and stranger imposed indignity, Mom and Dad reclaimed the self-respect needed to maintain engagement in community-based family leisure. In doing so, they also experienced dignity through engaged interactions with others in the community. By following examples set by the parents, Grandma and Great-Grandma also learned the strategies necessary for maintaining self-respect and making leisure outings enjoyable. The Grandmothers felt as though engaged interactions between their family and members of the community ensured their sense of dignity. The stories of the family members may provide leisure and recreation practitioners, researchers, families, and the general public with insights into cultivating practices that ensure dignified experiences of family leisure.

  • Subjects / Keywords
  • Graduation date
    Spring 2017
  • Type of Item
  • Degree
    Master of Arts
  • DOI
  • License
    This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.