Siblings with Disabilities: Positive or Negative Relationships?

Nancy Deaner
Graduate Student
Special Education (Teacher of students with disabilities)
University of Akronx

and

Timothy Lillie, Ph.D.
Assistant Professor of Education
University of Akron
E-Mail: tlillie@uakron.edu

Sibling relationships are defined in many ways and by several factors. Birth order, sex, age relationship, number of siblings, and parental influences are some factors that may affect the dynamics of a sibling relationship. The interactions between siblings play an important part in a child's social development. Knott, Lewis, and Williams (965-976) note that children often acquire social skills through their relationships with siblings, which they later use in social exchanges with their peers. This sibling interaction also provides children access to a variety of roles to assume and skills to develop. An older child often teaches and models and the younger child provides positive reciprocation. However, the relationship and its dynamics often change when one of the siblings has a disability. About 10-12% of all public school students are identified as students with disabling conditions (Turnbull, Turnbull, Shank & Smith, Exceptional Lives 4); this means that a substantial proportion of families and siblings who themselves are unlikely to experience disability are nevertheless affected by the fact of their relatives' identification by the schools. The cited figure includes students with all disabling conditions identified under the Individuals with Disabilities Education Act (IDEA), the governing Federal law for special education, and includes students with high-incidence conditions such as specific learning disabilities and mental retardation as well as students with low-incidence disabilities such as deafness, blindness, or autism. While IDEA itself provides for categorical definitions of disability, it has long been recognized that families of children identified have a range of needs that are more similar than different (Simpson, Working with Parents).

Research

There had been a long-standing belief that sibling relationships of children with disabilities were stressful, with even disastrous repercussions. It was the assumption that these children often develop a low self-concept because they identify with the negative behavior of their siblings who have disabilities (Knott, et al., 965-976). They could also develop behavior problems because of reduced parental attention, family resources, and high parental expectations. These beliefs originated from psychiatric reports and anecdotes about patients having a sibling with a disability (Dyson, Psychosocial 253-271). [Note 1] Cuskelly (111-124) notes that on the basis of these reports, the view that siblings of individuals with a disability were at risk for some mental health or related concerns was established in the popular as well as professional mind. Many writers and researchers, according to Cuskelly (111-124) accepted this opinion, even though these reports lacked any empirical basis. The acceptance of the notion that siblings of children with disabilities were more likely to have problems than siblings of those without disabilities, caused most research to focus on trying to identify which siblings of children with disabilities would most likely develop problems (Cuskelly, 111-124). Researchers generally ignored establishing whether a substantive difference actually existed between the two. That is, researchers historically assumed that the presence of disability in one family member was automatically a source of pathology affecting other family members. The point here is that researchers relied on unexamined assumptions rather than empirical validation of presenting pathology.

According to Cuskelly (111-124), the researchers who did use comparison groups still tended to focus on only the negative psychological and sociological aspects of having a sibling with a disability. Typically, researchers compared siblings of children with a variety of disabling conditions, such as spina bifida, and pervasive developmental disorder with siblings whose brothers or sisters did not experience disabling conditions. Even with this preconceived notion that is, that pathology was expected in the siblings of children with disabilities groups, studies using comparison groups often found conflicting results and, this therefore, initiated a challenge to the view that siblings of children with disabilities were a vulnerable group (Cuskelly, 111-124). Dyson (Psychosocial 253-271) points to the conflicting research results concerning siblings of children with disabilities as reflecting a cohort effect, meaning that studies begun in earlier years, when preconceived outcomes were expected, tended to result in similar findings while later studies, where preconceptions about results had attenuated, tended to also result in similar findings. The passing of Public Law 94-142 in 1975, the original version of the Federal special education legislation mentioned above as IDEA and its revisions, brought significant public awareness and social changes. The changes may have positively affected family adaptations, causing research since then to be more diverse in the findings regarding sibling relationships (Dyson, Psychosocial 253-271). [Note 2]

Focusing on the belief that relationships with siblings with disabilities would lead to only detrimental affects on the typically developing siblings was not the only drawback with early research. Cuskelly (111-124) found that most early research did not include adequate comparison groups. When comparison groups were used, there were often many differences between the groups, resulting in a poor matching. Sibling research comparison groups ought to be selected with thought regarding the issues of type of disability, family size, birth order, age spacing, gender, and marital status of the parents (Cuskelly, 111-124). Mismatched comparison groups result in uninterpretable results or in results that do not accurately reflect the effect of any of the above variables or a combination of such variables. Further, because of the previously poorly constructed studies, it is necessary to examine a number of variables in order to begin to determine which of these is most important and which may play a less important role in sibling dynamics. Another problem with the research were the sources of data. Researchers used data gathered from teachers and parents (primarily mothers) who were asked to rate the behavior of siblings of children with disabilities. Few researchers actually collected data from siblings themselves or from fathers (Cuskelly, 111-124), resulting in data which ignored important aspects of family dynamics which may have had an impact on sibling dynamics.

Sibling Relationship Development

Sibling relationships may be affected by other variables that need consideration in research such as: severity of the disability (Stoneman, 134-142), type of disability (Stoneman, 134-142; Hastings, 99-104; Knott et al., 965-976), socioeconomic status (Dyson, Psychosocial 253-271), and parental expectations and influences (Stoneman, 134-142). The authors have chosen to focus primarily on two of these topics. Dyson (Psychosocial 253-271) discusses the influence of personal and family adjustment on the nondisabled sibling. She notes that the nondisabled child's gender and age are factors, as is the family's social support, family functioning, and parental stress and reaction to the child with disabilities. Hastings (99-104), however, was unsure of the effects of age and gender on sibling adjustment and feels it requires more research to determine what elements may have an effect on sibling adjustment, and what the effect may be. Dyson (Psychosocial 253-271) found that the parents' emotional adjustment, availability of social support to the family, family relationships, and the family's emphasis on personal growth all had more influence on a child than a sibling's disability. Hastings (99-104) concurs with Dyson that variables relating to the parents' behavior, social support, plus the sibling's coping behavior, support, and knowledge of the disability are important factors in the development of sibling relationships. It is reasonable to assume that since sibling relationships develop within the context of the family that the family relationships mutually influence each other.

Stoneman (134-142) cites research that links marital distress, parental stress, and inter-parental conflicts with poorer adjustment, depression, lower self-esteem and more behavior problems in siblings of children with disabilities. A negative family environment may, therefore, adversely affect sibling relationships. Schreiber (33-44) also notes that a positive parental attitude is often imitated by the children. He notes that parents' feelings do not have to be actually expressed in words to be communicated. He further states that withholding information in an attempt to spare the feelings of nondisabled children can cause more harm and confusion; it is best to discuss feelings, expectations, and experiences openly and honestly. Dyson (Psychosocial 253-271) and Stoneman (134-142) both discuss how the socioeconomic status of a family can affect the family dynamics and the relationship of siblings. Both pointed out that the financial ability to provide assistance and more resources resulted in a higher positive adjustment in sibling relationships and those studies using less affluent families showed a higher level of negative results. Stoneman (134-142) further notes that even the size of the family (number of siblings) played a role in sibling relationships; larger families appeared better able to share care responsibilities for their disabled siblings than did smaller families, resulting in better sibling coping. This was postulated to possibly be due to the protective effect of larger families from excessive sibling involvement in care. Several studies reflected on how the severity of the disability affected the relationship of the siblings; sibling relationships in general resulted in less bonding and socialization when impairment was more severe and a greater bonding and socialization effect when impairment was less severe. It is not clear whether this effect is negative or positive.

Supporting Positive Relationships

Although the effects noted are often mixed, it is important to examine ways in which support, when needed, can be provided to siblings in order to take into account their unique characteristics and needs. Most parents desire and encourage their children to interact together and develop positive relationships. Sibling relationships generally span a longer timeline than any other relationship, providing support through adulthood. When one of the siblings has a disability the development of this relationship can be complicated. Interventions and support groups are two methods used to encourage positive relationship development among siblings when one has a disability.

Stoneman (134-142) reports an increase in interaction between children with mental retardation and their siblings when parents were taught intervention strategies involving the use of prompting and praise, as well as information about appropriate selection of social toys and arrangement of the play environment. The sibling with a disability and the normally developing sibling have also been the target for intervention, using prompts, praise, and initiation strategies that resulted in increased play interactions (Stoneman, 134-142). This suggests that parents may have a large role to play in how the sibling relationship works out. For instance, this research suggests that active, involved parents, who use praise as well as systems of prompts are likely to encourage the future positive development of sibling relations. The immediately increased play interactions noted should continue to develop and may, after a period of time, become maintained by natural supports, thus enhancing the relationship between siblings. What is clear from this study is that fostering relations between children who are disabled and their siblings should not be left to chance and, in fact, can be improved by targeted interventions.

Support groups are another method used to help children better understand and develop positive relations with a sibling with disabilities. Sibshops (Meyer & Vadasy, 1-49) is one of the best known community support groups for siblings of children with disabilities. Typically, Sibshops are projects that are informed by the Meyer and Vadasy model but which are developed by independent groups in each community in which they exist. Sibshops is designed to be able to be operated by individuals who are not specialized professionals. Sibshops target 8 to 13-year-olds and provide a social setting where they can obtain peer support, discuss concerns, learn how to handle commonly experienced situations, and learn more about the implications of their sibling's disability.

Dyson (Support Program 56-65) reports on a support program called simply "Sibling Group" which is reported to have been operated out of child development or community centers in an otherwise unnamed location in which participating siblings evaluated its effects. This program also provided information about siblings' disabilities, activities and opportunities to share experiences, develop strategies for resolving conflicts or problems, and to promote social networking. Dyson reports that most participants preferred learning more about their siblings' disability and methods to interact with and support such siblings. The siblings also found the opportunity to socialize and share experiences about the disabled sibling equally important. School-age siblings expressed a desire to learn how to get along with and to help their sibling with disabilities, as well as an interest in learning about other disabilities (Dyson, Support Program 57-65).

Labato and Kao (711-716) reported on a support group, SibLink, which involves both the parents and the siblings in an intervention program to increase sibling understanding of and adjustment to chronic illness and development disability. The premise of this group is that, because sibling and parent adjustments are interrelated, parents should be incorporated into sibling group interventions. They found that improvements in sibling knowledge, connectedness, and behavioral problems continued through a three-month follow-up. It is unclear if the positive effects noted were due to active parental involvement itself or were due at least in part to the synergistic effects of improved child interaction and parental involvement.

Sibling Views

Most research data concerning the relationships of siblings when one has a disability was gathered through the responses of mothers and teachers, which earlier was the only source of information, even though (as noted above) it was eventually judged to be inadequate. When siblings themselves were asked, most seemed to perceive the relationship in predominantly positive terms (Conners & Stalker, 80-102). The research conducted by Conners and Stalker (80-102) involved 24 siblings of disabled children who were between the ages of 6 and 19, with the largest cluster between 11 and 13. Most of these children reported having a positive relationship with their disabled sibling, engaging with them in shared activities and pastimes. The majority of these children felt some sense of responsibility for the sibling with disabilities even though they did not have a significant role in their caretaking. The children who reported spending little time with their special needs sibling had siblings with complex support needs and limited ability to communicate. Besides the positive feelings these siblings reported there were some frustrations and resentments, mainly directed at the attitudes of people outside the family and parental preoccupation with the child with disabilities. Some of the siblings described being bullied and teased but worried more about their brother or sister with disabilities being bullied, teased, and taken advantage of. The nondisabled siblings reported having a better understanding and tolerance for being different (Conners & Stalker, 80-102).

In this same study by Conners & Stalker (80-102), the children felt they sometimes received less attention than their siblings with disabilities yet felt guilty about such feelings. They described being worried about the welfare of their sibling and about their parents' distress. Several reports described more adverse views and concerns from the teenagers and young adults in their works (Conners & Stalker, 80-102; Dyson, Psychosocial 253-271; Schreiber, 33-44). Schreiber (33-44) notes that teenagers notice and Psychosocial about the differences and show concern about their friends reactions and acceptance, whereas young adults think about matters of genetics and expectations of responsibility for the care of a sibling with disabilities after the parents die. The older children in Conners' and Stalker's study also expressed negative reactions to the sibling with disabilities, citing lost friends and restricted social activities. The researchers (Conners & Stalker, 80-102) explain these reactions as not so much a result of the disability but more a matter of family dynamics and circumstances. Dyson (Psychosocial 253-271) found that children living with a sibling with disabilities do not necessarily deviate from the norm in the development of self-concept, social competence, and behavior adjustment with proper support and advantages. They do, however, take on special roles that may hinder their normal development in transition from childhood to adolescence.

Conclusions

As with all human relationships, there are complex developmental patterns. It is no different when a child with disabilities is involved. Influential forces affecting development not only include parental directives, emotional adjustment, marital stability, and stress levels but also the nondisabled child's personality and psychological make-up. Other factors such as economical advantages, social and behavioral supports, type and severity of the disability, interventions available, age differences, family size and relationships, and knowledge of the disability all play important roles in siblings developing positive relationships. With all these factors involved it is no wonder that researchers cannot conclude empirically that a child with disabilities positively or negatively influences a sibling relationship.

Recent studies are focusing more on the positive affects of having a sibling with a disability. As when researchers focused on only the negative aspects of these sibling relationships, the results are often contradictory and difficult to interpret. The research centering on the support and intervention programs basically target strategies to increase the social engagement between children and develop a better understanding of disabilities. The results are often descriptive in nature and polled from observers, like teachers and mothers. Effort has been expended on comparing siblings with disabilities to typically developing sibling groups to note differences and similarities. It is difficult, however, to define and recruit comparison groups that are compatible in age range, birth order, age relationship, number of siblings, type and severity of the disability, socioeconomic status, support systems available, and parental influences.

Discussion

Even when research shows a difference in growing up with or without a sibling with disabilities, the effect of such difference is often ambiguous. As is in the case in any sibling relationship, many factors influence the outcome. Perhaps the importance is not that there is a difference when growing up with a sibling with disabilities but that, with the proper influences, supports, and advantages, this experience can be positive. It seems from the authors interpretations of the research presented that young children are flexible and greatly influenced by parental examples and expectations (see Stoneman, 134-142). Most of the young children interviewed had warm and affectionate feelings for their sibling with a disability (Connors & Stalker 80-102). The children raised in homes with economic advantages and good parental emotional and psychological stability seemed more likely to have fewer difficulties in sibling interactions. These children had little to do with the care-taking responsibilities. This aspect often changes as the siblings age and the parents become incapable of continuing in the caretaking role. More extensive research and support needs to focus on the siblings, not as children, but as adults, when the siblings often have to take over important caretaking and quasi-parental responsibilities. As the nondisabled siblings reach adulthood, the new family consists not only of the sibling of the disabled person but the caretaking sibling's partner along with the children of the nondisabled sibling. A danger here is that sometimes, if plenty of advance planning is not done, the nondisabled sibling can feel torn between the responsibility he or she may feel to the sibling with disabilities and the responsibilities due to their present family. This can manifest in anxiety, guilt, and resentment, toward the disabled sibling (Schreiber 33-44).

Researchers need to focus on how relationships of adults with adult siblings with disabilities can be better aided, addressed, and influenced.

Works Cited

Breslau, Nancy,; Weitzman, Matthew, and Messenger, Kathie.

"Psychologic Functioning of Siblings of Disabled Children." Pediatrics 67 (1981): 344-353.

 

Connors, Cathy, and Stalker, Kevin.

The Views and Experiences of Disabled Children and their Siblings: a Positive Outlook. Philadelphia: Jessica Kingsley, 2003.

 

Cuskelly, M.

"Adjustment of Siblings of Children with a Disability: Methodological Issues." International Journal for the Advancement of Counseling 21: (1999) 111-124.

 

Daniels, Donna, Moos, Robert, Billings, Alan, and Miller III, John.

"Psychological Risk and Resistance Factors Among Children with Chronic Illness, Healthy Siblings, and Healthy Controls." Journal of Abnormal Child Psychology 15 (1987) 295-308.

 

Dyson, Lily.

"A Support Program for Siblings of Children with Disabilities: What Siblings Learn and What They Like." Psychology in the Schools 35.1 (1998): 57 – 65.

 

----.

"The Psychosocial Functioning of School-age Children who Have Siblings with Developmental Disabilities: Change and Stability over Time." Journal of Applied Developmental Psychology 20.2 (1999): 253 – 271.

 

Ferrari, Mary.

The Diabetic Child and Well Siblings: Risks to the Well Child's Self-concept." Children's Health Care 15 (1987): 141-147

 

Hastings, Richard P.

"Brief Report: Behavioral Adjustment of Siblings of Children with Autism." Journal of Autism and Developmental Disorders 33.1 (2003): 99 –104.

 

Knott, Fiona, Lewis, Charlie, and Williams, Tim.

"Sibling Interaction of Children with Learning Disabilities: A Comparison of Autism and Down's Syndrome." Journal of Child Psychology and Psychiatry 36.6 (1995): 965 – 976.

 

Lobato, Debra J., & Kao, Barbara T.

"Integrated Sibling-Parent Group Intervention to Improve Sibling Knowledge and Adjustment to Chronic Illness and Disability." Journal of Pediatric Psychology. 27.8 (2002): 711 – 716.

 

Meyer, Don J., and Vadasy, Paula F.

Sibshops. Baltimore: Paul H. Brookes. 1994.

 

Schreiber, Mark.

"Forgotten children." It Isn't Fair! Siblings of Children with Disabilities. Ed. Samuel Klein and Matthew Schleifer. Westport, CT: Bergin & Garvey, 1993. 33-44.

 

Simpson, Richard.

Working with Parents and Families of Exceptional Children and Youth 3^rd ed. Austin TX: Pro-Ed, 1996.

 

Stoneman, Zolinda.

"Supporting Positive Sibling Relationships During Childhood." Mental Retardation and Developmental Disabilities Research Reviews 7 (2001): 134 – 142.

 

Turnbull, Rud, Turnbull, Ann, Shank, Marilyn, and Smith, Sean

Exceptional Lives: Special Education in Today's Schools. 4^th ed. Upper Saddle River NJ and Columbus OH: Pearson/Merrill Prentice Hall, 2004.

Footnotes:

1. For additional sources on this topic see: Breslau et al. 344-353; Daniels et al. 295-308; Ferrari 459-476. [back ^]
   
   
2. Ibid [back ^]

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