International Meeting for Autism Research (May 7 - 9, 2009): Factors That Influence the Psychosocial Wellbeing of Siblings of Children with An Autism Spectrum Disorder Compared to Siblings of Typically Developing Children

Factors That Influence the Psychosocial Wellbeing of Siblings of Children with An Autism Spectrum Disorder Compared to Siblings of Typically Developing Children

Friday, May 8, 2009
Northwest Hall (Chicago Hilton)
2:30 PM
S. K. Dickson , University of Pennsylvania School of Nursing, Philadelphia, PA
K. M. Lesko , University of Pennsylvania School of Nursing, Philadelphia, PA
J. Pinto-Martin , Univ. of Pennsylvania School of Nursing and School of Medicine, University of Pennsylvania, Philadelphia, PA
Background: Autism Spectrum Disorders (ASDs) affect 1.5 million Americans and their families. The diagnosis of an ASD has a significant impact on all members of the family; however, few have investigated the relationship between an autistic child and their typically developing sibling. Sibling interviews and parent questionnaires were used to elicit information about how the sibling relationship is affected when one child has an ASD. These findings may have important implications for clinical care of the family.

Objectives: The purpose of this study is to evaluate the effect of having a sibling with an ASD on the psychosocial wellbeing of the typically developing sibling. The specific aims of the study include:
        1) to compare the experiences of siblings of children with an ASD to that of siblings of children with a developmental disability (DD) and siblings of typically developing children (TYP);  
        2) to describe the unique challenges faced by children with an autistic sibling.

Methods: This study integrates both parent and sibling perceptions of the relationship through semi-structured interviews and the Child Behavior Checklist for Ages 6-18 (CBCL).

Results: 131 siblings between the ages of 5 and 16 participated in the study (48 ASD, 49 DD, 34 TYP). The average age of the responding sibling was 10.5 years (ASD), 9.8 years (DD), and 10.1 (TYP).  Gender distribution among the groups was nearly even (49% male ASD, 47% male DD, 49% male TYP). Preliminary analysis revealed no significant differences between groups on the mean CBCL subscores and all averages were within the clinically normal range.  Although internalizing and externalizing behaviors were significantly correlated to “total problems” across all groups, the degree of correlation varied by group.  Similarly, overall “total competence” was not significantly different between the groups; however, the effect of activities, social and school scores on competence varied by group. 
           Qualitative responses from semi-structured interviews are being coded for analysis.  Interview questions examined topics such as: dynamics of sibling relationship, effect of sibling relationship on friendships, household responsibilities, sibling community involvement and experience of different emotions (i.e. guilt, sadness, anxiety, etc.).  Analysis of the sibling interviews could highlight some unique challenges faced by ASD siblings with respect to these topics.

Conclusions: This study highlights the need to expand intervention and treatment of ASDs, as well as other developmental disorders, to include a family-based approach. This information is critical for health care providers working with families with a child on the autism spectrum in order to provide the proper anticipatory guidance. Additionally, understanding the various roles held by siblings can inform inclusive support services for the family and thereby improve overall quality of life for diagnosed children.

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