Brianna Smith and Dr. Barbara Mandleco, BYU College of Nursing
Introduction
The purpose of this qualitative descriptive study was to identify the experiences of siblings between 8 and 18 years old of children with autism (CWA). Identification of these experiences can provide an insight into aiding families and siblings with interventions and support groups. By helping family members cope with the situation of raising a CWA, the quality of life of the child increases (Burgess, Gutstein, & Montfort, 2007)1, as do experiences of siblings.
Materials/ Methods
An ongoing IRB approved Families Adapting to Disabilities (FAD) study evaluated the experiences of siblings of CWA. Previously transcribed interviews were used from a former ORCA scholarship student in addition to newly conducted interviews with siblings of CWA. Participating siblings were asked the following BYU-IRB approved open-ended questions in an interview.
1. Tell me a little about your family (parents, siblings, self, etc.)
2. What was difficult about the experience?
3. What was easy about the experience?
4. If you could change anything about growing up with________ (name of child with autism), what would it be?
5. How has autism affected your family?
6. Tell me how your family members learned about autism.
7. Who or what was most helpful to you in gaining knowledge and understand about autism?
22 interviews were transcribed verbatim and analyzed by using appropriate qualitative methods. Themes and subthemes were identified and then categorized based on sibling age and gender, and whether the siblings were older or younger than the CWA.
Twelve siblings between 7 and 11 years of age frequently reflected on negative childhood experiences with the CWA, and based most of their knowledge regarding autism from what they learned from their mothers. However, when comparing the themes from this age group to themes of the 10 siblings between 12 and 18 year old, the older siblings did not remember how they learned about autism and their knowledge reflected a more academic stance of the disability. Many in this older age group reflected on life lessons learned from the CWA and frequently took a parental “role” in the care of the CWA as reflected by their interviews.
Differences were also noted according to sibling gender. Male siblings (n = 10) often said they wished they could have played more with the CWA growing up and frequently mentioned being hit or yelled at by the CWA. Female siblings (n =12) however, often mentioned the difficult relationships and challenging communication that occurred between them and the CWA, and often worried about the feelings of the CWA in social situations.
Siblings older than the CWA (n = 11) often reflected on life changes when the CWA was born and the disability was being recognized. These siblings often learned about the disability with the family whereas the 11 siblings younger than the CWA remembered learning based off of their mother’s knowledge. In addition, the older siblings made protective statements regarding the CWA compared to younger siblings’ statements, which focused much more on wishing the CWA was more of a playmate for them.
Discussion
Differences were noted when interviews were separated according to age, gender, and birth order. Therefore, when interacting with these siblings, individual approaches are critical in order to improve experiences for both the CWA and the sibling. By understanding these results and the different experiences siblings of CWA have, sibling relationships will improve and the quality of life for both the CWA and sibling will increase (Barr, McLeod, & Daniel, 2008)2.
References
- Burgess AF., Gutstein SE. & Montfort K. (2007). Evaluation of the relationship development intervention program. Autism September 2007 11: 397-411. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/17942454#
- Barr, J., McLeod, S., & Daniel, G. (2008). Siblings of children with speech impairment: Cavalry on the hill. Language, Speech, and Hearing Services in Schools, 39(1), 21-32. doi: 10.1044/0161-1461(2008/003)