The Experiences of Siblings of Children with Autism

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Elizabeth Ward and Dr. Barbara Mandleco, Nursing

Introduction

The social and behavioral issues of autism are very unique and have a deep impact on families, particularly siblings, as they learn to cope and live with a child with autism (CWA). However, there is limited information in the literature relative to the experience of the sibling, and the information that does exist is often conflicting. The research shows that siblings of CWA experience stress, frightening behavior, and violence in the home (Benderix & Sivberg, 2007). Furthermore, some researchers found that siblings demonstrated less intimacy in sibling relationships, and were negatively affected socially and emotionally (Hastings, 2003; Kaminsky & Dewey, 2001; Petalas, Hastings, Nash, Lloyd, & Dowey, 2009). However, research also shows positive effects, such as sibling maturity, sense of responsibility, positive self concept, lack of quarrelling and competition, admiration for the CWA, satisfaction with the relationship, and positive self-concept (Benderix & Sivberg; Kaminsky & Dewey; Macks & Reeve, 2007). Two studies explored variables contributing to the difference in results, finding that low socioeconomic status, male gender, older sibling age, smaller family size and stressful life events decreased siblings’ ability to cope with the CWA (Macks & Reeve; Orsmond, Kuo & Seltzer, 2009). Due to limited available research, the purpose of this study was to explore the experiences of siblings living with a child with autism (CWA).

Methods

Twenty siblings (eleven boys and nine girls between 7 and 18 years old, with a mean of 12.3 years) of sixteen CWA (mean age 11.2), whose families were already participating in the Families Adapting to Children with Disability/Chronic Condition study, took part in an audio recorded interview. All families in the study were Caucasian. Out of fifteen families, only two were single parent homes. Most claimed The Church of Jesus Christ of Latter-Day Saints as their religious preference (with the exception of one family with a Baptist/Presbyterian preference). With the exception of one mother, all parents have received fourteen years or more of education, from Bachelor’s to Master’s and Doctorate degrees. Most families’ annual income fell within the range of 50,000-75,000 dollars per year, with one family making 25,000-35,000 per year and three making over 100,000 per year. Participating siblings were asked the following BYU-IRB approved, open-ended questions:

1. Tell me what it was like growing up with_____(name of CWA).
2. What was difficult or hard about the experience?
3. What was easy or rewarding about the experience?
4. If you could change anything about growing up with______(name of CWA), what would it be?
5. Tell me what and how your family members learned about autism?
6. Tell me about anything else you would like to talk about.

The interviews were transcribed verbatim and analyzed using appropriate qualitative methods: categories were refined by collapsing across or creating sub-categories. Direct quotations that best represent the categories and sub-categories were identified through selective coding (Neuman, 2003). Reliability was confirmed by having at least two researchers code the data (Denzin & Lincoln, 2000).

Results

Siblings growing up with a CWA view the experience with ambiguity: while they recognize the difficulties, most siblings also recognize easy or rewarding aspects of the situation. One sibling explained that the experience “has ups and downs certainly, but mostly it’s been pretty good.” Difficult aspects of the experience included less attention for the normally-developing sibling, extra responsibility, bothersome behaviors (screaming, hitting, crying, tantrums, destructive behaviors, and repetitive behaviors), and lack of communication between siblings and CWA. In describing the aspects of responsibility and less attention, one teenage sibling explained: “Usually in a lot of stuff we do he comes first … [we] make sure he’s always taken care of first before we are taken care of.” Another sibling said that when his sister is “really frustrated and mad, it’s hard to talk to her without her screaming.”

However, siblings also noted that the CWA was sweet, affectionate, and smart, and siblings valued the time they spent together. Many siblings also expressed empathy, concern, love and appreciation for the CWA. One sibling in describing her sister with autism stated, “She sort of just cheers you up, and I don’t think I’d ever be able to live without it.” One important variable found in sibling responses was age. Younger children focused on present behaviors, while older children were more likely to reflect back on the experience and what they learned. For example, one seventeen year old sibling stated, “I’m glad I had the experience because it’s taught me so much … [about] unconditional love and not judging.” Even though many siblings would change the negative behaviors of the CWA, most would not change the disability or the child.

Conclusion

Results concur with current research: most siblings experience both positive and negative aspects of living with a CWA (Kaminsky & Dewey, 2001; Macks & Reeve, 2007). Many siblings, particularly older siblings, had gained something meaningful from the experience, even though all admitted that it had been difficult. Furthermore, most would not change anything about the CWA. This study highlights important needs of siblings of CWA, such as the need to be cared for and recognized as well as the CWA. Professionals working with families having a CWA should involve siblings as much as possible and recognize their need to be taught and appreciated. Younger siblings may also need guidance in synthesizing their experiences into meaningful life lessons. Practitioners can help siblings by educating them and their parents about autism, fostering understanding and patience. They can also teach them coping strategies to manage emotions and stress associated with the negative behaviors of the CWA. Overall, professionals should be aware of these siblings’ experiences and be sure they are afforded the time and attention needed to positively cope with living with a CWA, referring support groups and professional counseling as needed.

References

  • Benderix, Y., Sivberg, B. (2007). Siblings’ experiences of having a brother or sister with autism and mental retardation: A case study of 14 siblings from five families. Journal of Pediatric Nursing, 22(5), 410-418.
  • Denzin, N.K. & Lincoln, Y.S. (eds.). (2000). Handbook of qualitative research (2nd ed.). Thousand Oaks: Sage.
  • Hastings, R. P. (2003). Brief report: Behavioral adjustment of siblings of children with autism. Journal of Autism & Developmental Disorders, 33(1), 99-104.
  • Kaminsky, L., Dewey, D. (2001). Sibling relationships of children with autism. Journal of Autism & Developmental Disorders, 31(4), 399-410.
  • Macks, R., Reeve, R. (2007). The adjustment of non-disabled sibling of children with autism. Journal of Autism & Developmental Disorders, 37(6), 1060-1067.
  • Neuman, W.L. (2003). Social research methods: Qualitative and quantitative approaches, 5th edition. Boston: Allyn and Bacon.
  • Orsmond, G. I., Kuo, H. Y., & Seltzer M. M. (2009). Adolescent siblings of individuals with an autism spectrum disorder: Testing a diathesis-stress model of sibling well-being. Journal of Autism & Developmental Disorders, 39(7), 1053-1065.
  • Petalas, M. A., Hastings, R. P., Nash, S., Lloyd, T., & Dowey, A. (2009). Emotional and behavioural adjustment in siblings of children with intellectual disability with and without autism. Autism: The International Journal of Research & Practice, 13(5), 471-83.