International Meeting for Autism Research: Home Sweet Home? Families' Experience with Aggression In Autism

Home Sweet Home? Families' Experience with Aggression In Autism

Thursday, May 12, 2011
Elizabeth Ballroom E-F and Lirenta Foyer Level 2 (Manchester Grand Hyatt)
10:00 AM
S. Hodgetts1, D. B. Nicholas2 and L. Zwaigenbaum1, (1)Pediatrics, University of Alberta, Edmonton, AB, Canada, (2)University of Calgary, Edmonton, AB, Canada
Background: There are numerous anecdotal reports of aggression in persons with autism, and there is a considerable dearth of research in this area, including the effects of aggression on families (Dominick, Davis, Lainhart, Tager-Flusberg & Folstein, 2007; Gupta & Singhal, 2005).

Objectives: This qualitative study examined the lived experiences of 9 families with a young person with autism and aggression. Research aims included: (1) an examination of how aggression influences the daily lives of families, and (2) how aggression influences the supports and services that the young person with autism and his or her family received.

Methods: This qualitative descriptive study (Sandelowski, 2000) was conducted as part of a larger, mixed-methods study investigating the processes by which families navigate systems of care for young persons with autism. Participants for this analysis included parents of 9 males with autism, who ranged in age from 6 to 29 years. The person who self-identified as the primary caregiver (8 mothers, 1 father) participated in all interviews, and a spouse also participated in 4 of the interviews. An in-depth, semi-structured interview was conducted with each family. Interviews were audio-taped, transcribed verbatim, and subjected to content analysis. The interviewer also observed the physical environment in which the 8 families for whom the interview took place at home lived. Triangulation of data, including information from home observations, frequency of occurrences of codes, and quotes from interview data provided corroborating evidence for established themes (Creswell, 1998).

Results: Participants conveyed a range of experiences associated with having a child with autism and aggression. Data fell into three broad categories, reflecting the impact of aggression on (1) the daily lives, routines and well-being of immediate family members, (2) finances, and (3) availability and access to supports and services. Key themes included: social isolation; exhaustion from a constant state of ‘high alert’; safety of family members; out-of-pocket expenses for repairs and home adaptations; the immense need for, but lack of, respite; limited availability of professional supports to decrease or deal with aggression; and the assumption that the young person with autism will always live with the parents because of a lack of appropriate and safe alternatives.

Conclusions: Persons with autism are not inherently aggressive. However reports of aggression are relatively common, and those individuals that are aggressive do present unique and pervasive challenges to families, which have been overlooked in the literature. This exploratory examination provides unique information about families experiences living with someone with autism and aggression, and the impact that aggression has on the supports and services that families receive. The process of listening to the experiences and challenges of families living with someone with autism and aggression constitutes an important step in tailoring resources to best meet families’ needs.

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