The sibling relationship is typically the longest lasting familial relationship. When a disability is present, siblings may fill unique roles for their brothers/sisters with intellectual and developmental disabilities (IDD). Such roles may include advocates, supporters, and caregivers, to name a few. Sibling relationships and roles are shaped through a dynamic, lifelong, and reciprocal process, which includes the contributions of all family members (Cicirelli, 2013; McHale, Updegraff, & Whiteman, 2012). To have a holistic understanding of the lived experiences of siblings of individuals with IDD, it is important to examine the interaction between the life course and the experience of disability.
In this article, we will discuss the common experiences, roles, needs, and supports of siblings of individuals with IDD across the lifespan. We will also identify how experiences, roles, and needs may change over time, including the circumstances surrounding the change. Not all siblings have the same experiences as other siblings of individuals with IDD. Thus, we will try to identify certain conditions that may differentiate specific experiences. For clarity, we review the literature about siblings with respect to three life stages: childhood, adolescence, and adulthood (see Figure 1 for a synopsis of sibling needs for each life stage).
In childhood, regardless of whether a disability is present, young siblings spend most of their time at home with one another. Perhaps because of such sibling closeness (both in terms of proximity and time), the bulk of research has examined young siblings of individuals with IDD rather than older ages. In a review of such literature, Rossiter & Sharpe (2001) found that any negative effect of having a brother/sister with IDD was negligible. Their analysis reflects the mixed research findings about the effects of individuals with IDD on their siblings. Specifically, some studies report positive adjustment, other studies report negative adjustment, and, still further, some studies report no differences between siblings of children with and without IDD (e.g., Fisman et al., 1996; Meadan et al., 2010; Petalas et al., 2009; Pilowsky et al., 2004). With respect to possible positive effects, some research has found that having a brother/sister with IDD enables siblings to learn patience, kindness and supportiveness; acceptance of differences; compassion and helpfulness; empathy for others; and insight into coping with challenges (Petalas et al., 2009, 2012).
On the other hand, some research has found negative effects including feelings of jealousy toward the attention their brother/sister receives; anger over a lack of attention the sibling receives; resentment of having to explain, support, and/or take care of their brother/sister; embarrassment about the behavior of their brother or sister; and guilt (Roeyers & Mycke, 1995).
In childhood, siblings may already be fulfilling or anticipating caregiving roles in relation to their brothers or sisters with IDD, which is often referred to as “parentification.” In a sample of 45 young siblings, 80% of siblings reported that they would be the person most responsible for taking care of their brother/sister with IDD in the future (Eisenberg et al. 1998). Other research has suggested that young siblings may serve as interventionists or teachers for their brothers/sisters with IDD (Shivers & Plavnick, 2015).
Many young siblings report receiving limited information and guidance about the disability and support needs of their brother/sister with IDD (Conway & Meyer, 2008). Thankfully, there is an internationally renowned program named “Sibshops” (Meyer & Vedasy, 2007). Sibshops use a group model wherein young siblings, ages 8 to 13, can share their feelings and experiences with other siblings of individuals with IDD. Although there is limited research about the effectiveness of the Sibshops model, it has been widely used throughout the world to support young siblings (Meyer & Vedasy, 2007).
A middle-school-aged brother and sister riding their bikes and smiling at each other.
Overall, as siblings become adolescents there is often reduced positivity toward their brothers/sisters with IDD, time spent with each other, and mutual interest (Petalas et al., 2012). Further, adolescent siblings start to become aware of the social aspects of disability, which often makes adolescent siblings wary of the reactions of their peers towards their brothers/sisters with IDD. For example, adolescent siblings may be anxious about how they tell friends about their brothers/sisters with IDD (Petalas et al., 2012). In an interview study with 19 adolescent siblings, 89% of siblings reported that others do not accept their brothers/sisters with IDD (Opperman & Alant, 2003).
As with childhood, adolescence brings positive and negative sibling experiences. For example, due to their brothers/sisters with IDD, adolescent siblings report increased tolerance, understanding of disability, and diversity, and shared moments of fun and pleasure (Meyer & Holl, 2014). On the other hand, adolescent siblings of individuals with (versus without) IDD also report increased pity, anxiety, and guilt (Shivers & Dykens, 2017; Opperman & Alant, 2003).
Similar to childhood, adolescent siblings fulfill a variety of roles in relation to their brothers/sisters with IDD. Such roles may include:
Adolescent siblings report needing to understand the nature and consequences of the disability of their brothers and sisters (Opperman & Alant, 2003). In addition, adolescent siblings report feeling lonely and isolated as their peers may not understand their experiences as siblings of individuals with IDD (Opperman & Alant, 2003). To address these needs, adolescent siblings may benefit from broadening their social support network. By providing a support group with similarly aged adolescent siblings, siblings may provide peer support to each other.
Compared with childhood and adolescence, adult siblings report more involvement in the lives of their brothers/sisters with IDD, especially as their parents age. Simultaneously, adult siblings experience their own life events (e.g., attending college, getting married, having children). Consequently, siblings may struggle with juggling multiple responsibilities. Adult siblings are often referred to as the “club sandwich generation” as they may not only care for their brothers/sisters with IDD, but also for their aging parents and, potentially, their own offspring (Hodapp, Sanderson, Meskis, & Casale, 2017).
With respect to relationships, most adult siblings report positive sibling relationships (Rossetti & Hall, 2015). When siblings live far away from one another, however, they may have less close relationships (Rossetti & Hall, 2015). As a result, adult siblings may report feelings of guilt for not spending time together (Rossetti & Hall, 2015). In a national survey completed by 1,021 adult siblings, more than 50% of siblings reported feeling guilt (Shivers, 2019).
The most commonly discussed role of adult siblings is that of caregiver. Caregiving may include securing residential arrangements, conducting financial arrangements, having legal guardianship, interacting with the service delivery system, and providing companionship (Burke et al., 2012). From a national survey, almost 87% of siblings planned to engage in some caregiving for their brothers/sisters with IDD (Lee, in press). Notably, not all siblings become caregivers. For example, Avieli and colleagues (2019) found that some siblings are estranged from their brothers/sisters with IDD. Other adult sibling roles may include friend, advocate, legal representative, sibling, leisure planner, informal service coordinator (Hall & Rossetti, 2018).
From a national survey conducted by the Sibling Leadership Network in 2015, siblings were asked about the types of support they need and the types of support they receive (see Figure 2). Although siblings reported a variety of needed supports, there was a big gap between their needs and actual supports received. For example, only 25% of adult siblings received supports regarding the adult service disability system despite 80% of adult siblings reporting needing this support (Lee, Burke & Arnold, under review).
Above all, given their greater involvement in caregiving, most adult siblings desire to participate in future planning with their families (Lee et al., 2019). Future planning is critical for siblings to become advocates before a crisis occurs. To address the needs of siblings, researchers have developed and tested future planning trainings. For example, Lee and Burke (2019) developed a future planning training that targeted adult siblings of individuals with IDD. Participants in the training demonstrated significantly greater knowledge about adult disability services, problem-solving skills, and future planning activities.
Overall, there is limited information about the experiences and needs of siblings of individuals with IDD across the lifespan. Longitudinal research could identify variables and procure essential information to develop supports for siblings (Hastings, 2007). Indeed, given the important roles of siblings, more research needs to explore the lived experiences of siblings of individuals with IDD.
Avieli, H., Band-Winterstein, T., & Bergman, T. A. (2019). Sibling relationships over the life course: Growing up with a disability. Qualitative Health Research, 1–12.
Benderix, Y., & Sivberg, S. (2007). Siblings’ experiences of having a brother or sister with autism and mental retardation. A case study of 14 siblings from 5 families. International Pediatric Nursing, 22, 410–418.
Burke, M. M., Taylor, J. L., Urbano, R., & Hodapp, R. M. (2012). Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 117, 33–47.
Conway, S., & Meyer, D. (2008). Supporting siblings: Developing support for siblings of young people with disabilities. Support for Learning, 23, 113–117.
Eisenberg, L., Baker, B. L., & Blacher, J. (1998). Siblings of children with mental retardation living at home or in residential placement. Journal of Child Psychology and Psychiatry, 39, 355–363.
Fisman, S., Wolf, L., & Ellison, D., et al. (1996). Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 1532–1541.
Hagiwara, M., Palmer, S. B., Hancock, C. L., & Shogren, K. A. (2018). Sibling roles in family-school partnerships for students with disabilities during transition planning. Career Development and Transition for Exceptional Individuals, 42, 194–200.
Hall, S., & Rossetti, Z. (2018). The roles of siblings in the lives of people with severe to profound intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 31, 423–434.
Hastings, R. P. (2007). Longitudinal relationships between sibling behavioral adjustment and behavior problems of children with developmental disabilities. Journal of Autism and Developmental Disorders, 37, 1485–1492.
Hodapp, R. M., Sanderson, K. A., Meskis, S. A., & Casale, E. G. (2017). Adult siblings of persons with intellectual disabilities: Past, present, and future. International Review of Research in Developmental Disabilities, 53, 163–202.
Lee, C., & Burke, M. M. (2019). A pilot study of a future planning program for siblings of individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities.
Lee, C., Burke, M. M., & Arnold, C. K. (under review). Sibling participation in service planning meetings for their brothers and sisters with intellectual and developmental disabilities.
Lee, C., Burke, M. M., Arnold, C. K., & Owen, A. (in press). Compound sibling caregivers of individuals with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities.
Lee, C., Burke, M. M., & Stelter, C. R. (2019). Exploring the perspectives of parents and siblings toward future planning for individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 57, 198–211.
McHale, S. M., Updegraff, K. A., & Whiteman, S. D. (2012). Sibling relationships and influences in childhood and adolescence. Journal of Marriage and Family, 74, 913–930.
Meadan, H., Stoner, J. B., & Angell, M. E. (2010). Review of the literature related to the social, emotional, and behavioral adjustment of siblings of individuals with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 22, 82–100.
Meyer, D., & Holl, E. (2014). The sibling survival guide: Indispensible information for brothers and sisters of adults with disabilities. Bethesda, MD: Woodbine House.
Meyer, D. J., & Vadasy, P. (2007). Sibshops: Workshops for siblings of children with special needs. Baltimore, MD: Brookes Publishing.
Opperman, S., & AlantE. (2003). The coping responses of the adolescent siblings of children with severe disabilities. Disability Rehabilitation, 25, 441–454.
Petalas, M. A., Hastings, R. P., Nash, S., Hall, L. M., Joannidi, H., & Dowey, A. (2012). Psychological adjustment and sibling relationships in siblings of children with autism spectrum disorders: Environmental stressors and the broad autism phenotype. Research in Autism Spectrum Disorders, 6(1), 546–555.
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, 13, 471–483.
Pilowsky, T., Yirmiya, N., Doppelt, O., Gross-Tsur, V., & Shalev, R. S. (2004). Social and emotional adjustment of siblings of children with autism. Journal of Child Psychology and Psychiatry, 45, 855–865.
Roeyers, H., & Mycke, K. (n.d.). Siblings of a child with autism, with mental retardation and with a normal development. Child Care Health Development, 21, 305–319.
Rossetti, Z., & Hall, S. (2015). Adult sibling relationships with brothers and sisters with severe disabilities. Research and Practice for Persons with Severe Disabilities, 40, 120–137.
Rossiter, L., & Sharpe, D. (2001). The siblings of individuals with mental retardation: A quantitative integration of the literature. Journal of Child and Family Studies, 10(1), 65–84.
Shivers, C. M. (2019). Self-reported guilt among adult siblings of people with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 124, 470–477.
Shivers, C. M., & Dykens, E. M. (2017). Adolescent siblings of individuals with and without intellectual and developmental disabilities: Self-reported empathy and feelings about their brothers and sisters. American Journal on Intellectual and Developmental Disabilities, 122, 62–77.
Shivers, C. M., & Plavnick, J. B. (2015). Sibling involvement in interventions for individuals with autism spectrum disorders: A systematic review. Journal of Autism and Developmental Disorders, 45, 685–696.