Evaluating Interactions Between Autism Severity and Typically Developing Adolescent Siblings' Resources and Coherence Levels

Background:  Research involving sibling dyads, particularly those in which one has a disability, is vitally important to health care providers because of integral roles family members play in providing, promoting and protecting the disabled person. It is necessary to identify the resources in the unaffected siblings that promote or interfere with their adaptation in order to facilitate adjustment and enhance conditions for all family members. Given the rising prevalence, complex nature of autism, and autism’s impact on family adjustment, it is critically important to characterize unaffected siblings of individuals with ASD.

Objectives:  The primary aim of the study was to characterize adolescent siblings of individuals with an Autism Spectrum Disorder through a description of demographic data, coping strategies, network quality, psychological well-being, and life orientation. A secondary aim was to test a health promotion model of Salutogenesis by Antonovsky. 

Methods:  Professional agencies serving families with an ASD were contacted via local offices and Internet websites to recruit for the study. Families who had a family member with autism, PDD-NOS, or Asperger syndrome contacted the researcher and were mailed a research packet if they and had a typically developing adolescent sibling who had lived with the individual with ASD for > than one year. Parents provided consent and completed a demographic survey and the Childhood Autism Rating Scale-2. Sibling assent yielded a sample of adolescent siblings (N=100).  Data were obtained using four instruments: Network of Relationship Questionnaire – Social Provision Version; Adolescent Coping Orientation for Problem Experiences; Youth Self Report; and Sense of Coherence. Bivariate data from each instrument’s subscales provided rich descriptions.  Correlations of the concepts of resources, stress and coherence were examined and hierarchical multiple regression models were used to test the model. An indirect effect of each resource was also analyzed. 

Results:  A majority of the adolescent siblings were white (86%), female (59%). The median age was 14 (SD=2.02) with 63% older than their sibling with ASD. SOC scores were greater in female siblings and siblings from small families. Each of the instruments subscales had significant correlations (p < .001) to the SOC. The theoretical framework of Salutogenesis was supported by sibling data. With age and gender constant, higher SOC scores were inversely related to ASD severity (r =-.270; p < 001).  The total problem scale on the YSR mediated the relationship of ASD severity and sibling SOC scores.  

Conclusions:  The functional capacity of individuals with ASD can vary but most have a normal lifespan and may outlive their parents. Thus, siblings of those with ASD may also be future caregivers; this has significant social implications. To date, little is known about the resources TD adolescent siblings have or need to prepare them to assume this important role. Thus, this research builds on previous sibling research and fills a gap in the literature by characterizing TD adolescent siblings of individuals with ASD.  This study is a first step for promoting the health and adjustment of TD siblings of individuals with ASD.