2016 Gatlinburg Conference Poster
PS-43
Title: Highs and Lows: Parents Reflect on Autism's Impact on the Family
Authors: Tyler A. Hassenfeldt, Angela Scarpa
Introduction: The relationship between a child with a developmental disability (DD) and his/her family is nonlinear and mutually
influential (Patterson, 1991). This has a number of implications for family functioning. Dyson (1997) found that parents of
children with DDs had more child-related parenting stress than parents of typically-developing (TD) children, and parental stress
was correlated with various negative aspects of family functioning.
Within the field of DDs, it is critical to examine the entire family context, as studying each member individually is insufficient to
understand the system at large. More narrowly, symptoms associated with an Autism Spectrum Disorder (ASD) may place a
number of burdens on family members (Herring et al., 2006), leading them to rearrange their lives and forfeit social
opportunities (Kelly, Garnett, Attwood, & Peterson, 2008). Myers and colleagues (2009) utilized an online open-ended
questionnaire to discover five crucial areas in which ASD impacts the family: stress, the behavior of the child with ASD, parental
well-being, impact on the family as a whole, and social isolation. Woodgate, Ateah, and Secco (2008) found that families of
children with ASD describe themselves as "living in a world of our own." The current study employed qualitative methods to
explore both the "hassles" and "uplifts" (Giallo & Gavidia-Payne, 2006) of living with a child with ASD.
Methods: Data were collected through two focus groups (n=5) and 14 individual interviews, for a total of 19 participants. All
participants had a child with a previous ASD diagnosis as well as a TD sibling (grades 1-9). Families were recruited nationally,
with 68% living in Virginia. Interviewees were predominantly Caucasian, female, and the child's biological parent. Interviews
were recorded and transcribed; data were coded using NVivo for Mac coding software.
Results: A number of common themes emerged through the use of classical content analysis (Leech & Onwuegbuzie, 2011),
highlighting both the unique challenges and 'silver linings' of having a child with ASD. Initially, many parents described feelings of
grief and disappointment upon receiving their child's diagnosis. Struggles to accept the diagnosis and alter initial expectations
were depicted. Coordinating therapy services for their child was noted to be particularly overwhelming. Parents reflected upon
a number of ways that their child with ASD places limits on the family, such as restrictions on social outings or family meals due
to behavior problems.
More positively, parents described a number of collateral benefits their TD children experience, such as increased patience,
compassion, awareness, and empathy. Some families noted improved closeness between siblings and between parents. Parents
shared how their child with ASD's restricted interests could be channeled into positive outcomes. Finally, many participants
discussed how their child's ASD symptoms provided a sense of perspective - a reminder to count their blessings, because "it
could always be worse.
Discussion: Parents discussed their perceptions of a number of both positive and negative effects on the overall family unit
stemming from their child with ASD. Findings have implications for supports and resources that should be offered to families and
TD siblings. The positive aspects of a challenging disorder are important to share with families of newly-diagnosed children.
References/Citations:
• Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). ''My greatest joy and my greatest heart ache:'' Parents' own
words on how having a child in the autism spectrum has affected their lives and their families' lives. Research in Autism
Spectrum Disorders, 3(3), 670-684. doi:10.1016/j.rasd.2009.01.004
• Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child
with autism. Qualitative Health Research, 18(8), 1075-1083. doi:10.1177/1049732308320112