Full Spectrum: Siblings of Children with Autism Spectrum Disorders

Siblings of Children with Autism Spectrum Disorders:
Psychosocial Adaptation, Sibling Relationships and Parental Stress Factors
(This was a proposal/ assignment for a Research Methods class at Montclair State University, however, I do want to execute the study in the near future)

I. Purpose
The purpose of this study is to examine the siblings of children with autism spectrum disorders (ASD) and discover how this condition along with parental stress factors influences their own psychosocial structure and the relationship with their disabled sibling.

II. Definition of Terms

1) Autism Spectrum Disorder (ASD)
Autism Spectrum Disorders (ASD’s) are a group of developmental disorders which are derived from the disorder Autism (sometimes called “classical autism”) Autism is characterized by a variety of behavioral deficits such as impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests.
The ASD’s include Asperger’s syndrome, Rett’s syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). (http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#133693082)

III. Justification of Study
In recent years, Autism and Autism Spectrum Disorder (ASD) have been receiving a lot of attention in both the educational as well as medical fields. Approximately mid-point during the twentieth century is when the name for this disorder first appeared; and now it affects an estimated 3.4 in every 1,000 children ages 3-10. It has been made clear that Autism can create disruption in families and unfulfilled lives for many children
(http://www.nimh.nih.gov/health/publications/autism). A lot of research is being done to investigate the causes of this disorder from an organic and biochemical perspective. At the same time, there is equal work and research being done to explore treatments plans, behavioral approaches and interventions for the ASD child in the educational setting.
Currently, there appears to be a growing interest in how this disorder affects families. A recent study investigated family resilience of children with autism; showing such effects as connectedness and closeness, positive meaning-making of the disability and spiritual and personal growth. (Bayat, 2007) However, Autism in any form is still a stressful condition to deal with; the parents and the other children in the family will in no doubt be influenced by this fact. Numerous studies involving the psychosocial adjustments, behaviors and coping skills of siblings of children with ASD have appeared in the last ten years showing the importance and interest in this area. (Kaminsky & Dewey, 2002; Roeyers & Buysse, 2003; Macks & Reeve, 2007; Orsmond, Kuo & Seltzer, 2009). Interestingly, these recent studies show inconsistencies. There are many reviewed studies that have discovered negative outcomes for the siblings; which include feelings of being alone and increased behavior problems due to the ASD of their brother or sister. However these fail to indicate the conditions of the environment and various circumstances that may have an effect on these conclusions (Rivers & Stoneman, 2003).
In a typical family, siblings play together and develop supportive relationships through intimate daily contact with each other during their childhood years. Both nurturance and conflict play a part in developing a sense of emotional understanding, self-regulation and feeling comfortable with their sense of belonging. (Orsmond & Seltzer, 2007) In families where there is a child with ASD, the sibling relationship may be compromised but at the very least, different than in a typical family; this is mainly due to the fact that the ASD sibling may lack such things as play or social skills. In addition, stress factors of the parents also have an effect on this dynamic. Sometimes parents may feel inadequate in handling their Autistic child and this stress may ultimately make regular family activities, such as trips or outings more difficult (Twoy, Connolly, & Novak, 2006; Higgins, Bailey, & Pearce, 2005). Changes in the family’s daily living and stressed behaviors of parents in connection with the ASD child may create resentment and subsequent difficulties in the sibling relationship.

IV. Annotated Bibliography
1) Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, Vol. 51, part 9, p.702-714.
In this article, the author explores the factors of family resilience and states that despite the popularity of this area of study, little has been done in families with children that have disabilities. The conclusions indicate that a significant number of families of children with autism present factors of family resilience. Participants in this study were parents only, with no siblings involved in the data. Also within the article, there are aspects that are noted but not fully explored, such as parents being advocates for their autistic child. These, the author states may influence the elements of resilient families and may need further examination. In addition, the study has a major limitation regarding demographics; stating that about 63% of the participants were from middle to upper middle white families.

2) Kaminsky, L. & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry, 43 (2), p.225-232.
This article described a comparative study and used two other groups to measure the psychosocial adjustment of the siblings of children with autism; one being siblings of Down syndrome and the other siblings of normally developing children. It focused on feelings of loneliness and social support as well. There were several measures used: Achenbach Child Behavior Checklist (Achenbach, 1991), Social Support Scale for Children (Harter, 1985), Loneliness and Social Dissatisfaction Questionnaire (Asher et al, 1984), Adaptive Behaviors Questionnaire, and Demographics Questionnaire. Ultimately, the study concluded that enhanced psychosocial adjustment of siblings of children with autism was associated with a larger number of siblings in the family. A major limitation noted in this study was that 80% of the siblings were older than the child with autism and because of the small number of younger participants analyses comparing these two were not possible. Therefore the findings may not be applicable to younger siblings.

3) Macks, R. & Reeve, R. (2007). The adjustment of non-disabled siblings of children with autism. Journal Autism Dev Disord., 37: 1060-1067.
In this study, siblings of autistic children were compared to siblings of non-disabled children. The outcome showed that having a child with autism seems to enhance the psychosocial and emotional well-being of their siblings when demographic risk factors are limited. Both children and parents participated in this study and were measured by standardized means. The children were asked to complete the Children Depression Inventory-Short Form (CDI-S) (Kovacs, 1992) as well as the Piers-Harris Children’s Self-Concept Scale (Piers, 1984). Parents completed Behavior Assessment System for Children-Parent Rating Scales (BASC-PRS) in relation to their non-disabled child. The study noted that positive results may have had some explanations. For example, siblings may have viewed themselves quite favorably as compared to their disabled brother or sister. Another factor from the parental perspective is that most parents of ASD may not have an accurate view of their typical child because they spend so much time caring for the child with autism. Discrepancies were noted between self-reports and parent reports; noting that most studies will have a single type of respondent however multiple types of respondents were advisable in this situation. Once again, demographics were emphasized in the discussion section indicating that future studies should examine race, religion, marital status, and gender of the ASD child.

4) Rivers, J.W. & Stoneman, Z. (2003). Sibling relationships when a child has autism: marital stress and support coping. Journal of Autism and Developmental Disorders, Vol. 33, no. 4.
This article is most relevant to my study because it involves the stress of the parents. As hypothesized by the author, when the marital stress levels were higher, the siblings and the relationships were more compromised. Overall however, the siblings did express satisfaction with their sibling relationships whereas parents were somewhat less positive. Parent-sibling triads were used in this study (1 parent, autistic child, typical child) and incorporated self- report inventories and questionnaires. Two main instruments were used in measuring results: Sibling Inventory of Behavior (SIB) (McHale & Gamble, 1987) and Satisfaction with the Sibling Relationship Scale (modified in 1989). Marital Stress was measured by a modified version of the FILE: Family Inventory of Life Events and Changes (McCubbin, Thompson, & McCubbin, 1996). The author stated that families who experienced extreme amounts of marital stress and sought a high level of formal supportive services outside the family, had more negative reports related to sibling relationships in comparison to families who sought lower levels of outside support. These findings, the author states, reinforce the importance of looking at family context as an important factor in assessing the qualities of the sibling relationship.

References
Achenbach, T.M. (1991). Manual for the child behavior checklist/4–18 and 1991 profiles. Burlington, VT: University of Vermont Department of Psychiatry.
Asher, S.R., Hymel, S., & Renshaw, P.D. (1984). Loneliness in children. Child Development, 55, 1456–1454.
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, Vol. 51, part 9, p.702-714.
Harter, S. (1985). Manual for the Social Support Scale for Children. Denver, CO: University of Denver.
Higgins, D., Bailey, S., & Pearce, J. (2005) Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9(2), 125-137.
Kaminsky, L. & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry, 43 (2), p.225-232.
Kovacs, M. (1992). The children’s depression inventory: Manual. North Tonawanda, NY: Multi-Health Systems, Inc.
Macks, R. & Reeve, R. (2007). The adjustment of non-disabled siblings of children with autism. Journal Autism Dev Disord., 37: 1060-1067.
McCubbin, H. I., Thompson, A. I., & McCubbin, M. A. (1996). Family assessment: Resiliency, coping, and adaptation. Madison, WI: University of Wisconsin.
McHale, S. M., & Gamble, W. C. (1987). Sibling relationships and adjustment of children with disabled brothers and sisters. Journal of Children in Contemporary Society, 19, 131–158.
www.ninds.nih.gov (2009) National Institute of Health/ National Institute of Neurological Disorders and Stroke
Orsmond, G.I., Kuo, H., & Seltzer, M. (2009). Siblings of individuals with an autism spectrum disorder: Sibling relationships and well-being in adolescence and adulthood. Sage Publications and the National Autistic Society, Vol. 13 (1) p. 59-80

Orsmond, G. I. & Seltzer, M. (2007). Siblings of individuals with autism spectrum disorders across the life course. Mental Retardation and Developmental Disabilities Research Reviews, 13:313-320.
Piers, E. V. (1984). Piers–Harris children’s self-concept scale: Revised manual. Los Angeles, CA: Western Psychological Services.
Rivers, J.W. (2008). Child temperaments, differential parenting, and the sibling relationships of children with autism spectrum disorder. Journal Dev Disorders, 38: 1740-1750.
Rivers, J.W. & Stoneman, Z. (2003). Sibling relationships when a child has autism: marital stress and support coping. Journal of Autism and Developmental Disorders, Vol. 33, no. 4.
Twoy, R., Connolly, P.M. & Novak, J.M. (2007). Coping strategies used by parents of children with autism. Journal of the Academy of Nurse Practioners,19, p. 251-260.