The Experiences of Siblings of Individuals with Special Needs   

Kim Dudzinski, EdD, OTR/L, Mary Stein, OT-S, Veronica Sarti, OT-S, Alexis Bellacera, OT-S, & Hannah Sbacchi, OT-S 

Introduction

Individuals who grow up with siblings with special needs may receive less attention throughout childhood. When one child in the family has multiple needs that require extra concern, the needs of the other children may be overlooked. The bond of siblings plays a critical role in an individual’s development and mental health. While there has been a significant amount of research on how a child with special needs impacts the family as a whole unit, there is limited information as to how this impacts the sibling (Braconnier et al., 2018). Additional research needs to be done on how the health of the child with special needs impacts the health and development of the typically developing sibling(s). 

There are both pros and cons to growing up with a sibling with increased needs. Siblings of individuals with Autism Spectrum Disorder (ASD) suggest an opportunity to gain both interpersonal and intrapersonal skills. They also report positive behaviors in their sibling relationships. However, siblings tend to carry more stress as a result of their siblings' diagnosis (Shivers et al., 2019). In another study, siblings of children with ASD exhibited poor psychosocial functioning (Caliendo et al., 2020). A long-term study with 45,000 people showed that siblings of children with either Fetal-alcohol syndrome (FAS) or ASD are more likely to receive a mental health diagnosis (Marquis et al., 2020). 

Insights from the Siblings

This study, completed by Master of Occupational Therapy students from AdventHealth University, aimed to explore the question of what it's like to have a sibling with special/increased needs. Eighteen adult siblings completed the online survey, answering questions that required them to reflect on both their past and present quality of life, their mental and physical well-being, and level of support.  

Themes were identified from the open-ended questions in the survey. When asked about family dynamics, the identified themes included maturing quickly, frustration, less attention, and isolation. Some participants commented on the responsibility they felt to “watch” and “protect” their sibling. Many of the participants notably sensed the shift in attention with one participant stating, “There was some time I resented it.” Additionally, some of typically developing siblings relayed that their daily routine revolved around medical appointments, stating “social life was minimal.”  

The second open-ended question asking about overall impact from the sibling with special needs revealed four themes: taking on parental role, advocacy, impact on decisions, and optimism. Many participants commented on the fact that they took on a caregiver/parental role instead of a sibling. One participant stated, “I spent a lot of time when he was younger caring for him and my half sister.” Similarly, one participant emphasized “trying to find the right resources” for their sibling to achieve milestones. Notably, a few participants commented that having a sibling with special needs has shaped their career goals, marriage, living location, and family planning. 

Participants answered a multiple-choice question regarding their experience of caregiver burnout. Please refer to Diagram 1 which summarizes information on caregiver burnout. Surprisingly eight participants felt they experienced no caregiver burnout during their time spent with their family. On the other hand, seven participants felt they have experienced caregiver burnout and it was experienced about 25% of the time spent with their family. Only one participant selected they felt caregiver burnout more than 75% of the time spent with family. It is important to note that a large majority of participants felt they did not experience any caregiver burnout throughout their sibling relationship.  

The participants answered two multi-select questions regarding how much support they felt they had in the past/present and who was part of their support system in the past/present. Please refer to Diagram 2 and 3 for perceived support in childhood and adulthood. 

One of the large percentage increases were found between the eleven participants who felt they had support in the past and fifteen participants who feel they have support in the present. There was one participant who was unsure about the support they had in the past; whereas there were two participants who were unsure about the support they currently have. The amount of participants who felt they did  not have support decreased from five participants in the past to one participant in the present. Most of the participants felt their largest support system was between their family and friends. Lastly, there were no participants who selected that support groups have been a part of their support system neither in the past nor present.  

Supporting the Siblings

The responsibility that came during childhood for many, did not go away during adulthood. In fact, a portion of the participants reported a large influence on life choices such as marriage, family planning, and career choice. Based on this questionnaire, the most challenging aspects of having a sibling included maturing prematurely, caregiver burnout, less attention, frustration, and isolation. While this study  is not generalizable to all siblings of those with special needs based on the limited number of participants, the study supports the importance of increasing awareness and support for the siblings of individuals with special needs.  

Clinical Implication

The sibling is an important piece of the puzzle in both pediatric and adult settings. From a family-centered approach, it is important to understand the possible perspectives of typically developing siblings. Occupational therapists may be able to help address the siblings’ concerns in both childhood and adulthood. For example, having age-appropriate resources for improved mental and physical well-being, suggestions for extracurricular activities, supportive family education, and including the sibling in discussion during therapy are some of the ways OT may be able to improve the experience of the sibling without special needs. Although none of the participants answered ‘support groups’ as part of their support system, it may be beneficial to have information for accessible family or sibling support groups. This information reveals the unique role and experience of a typical sibling as they reflect on childhood and adulthood, both through an individualistic and collective lens, giving healthcare professionals more information on this population’s experience. 

References 

Braconnier, M. L., Coffman, M. C., Kelso, N., & Wolf, J. M. (2018). Sibling relationships: Parent-child agreement and contributions of siblings with and without ASD. Journal of Autism and Developmental Disorders, 48(5), 1612-1622. https://doi.org/10.1007/s10803-017-3393-9 

Caliendo, M., Lanzara, V., Vetri, L., Roccella, M., Marotta, R., Carotenuto, M., Russo, D., 

Marquis, S., McGrail, K., & Hayes, M. V. (2020). Using administrative data to examine variables affecting the mental health of siblings of children who have a developmental disability. Research in Developmental Disabilities, 96, 103516. https://doi.org/10.1016/j.ridd.2019.103516 

Shivers, C. M., McGregor, C., & Hough, A. (2019). Self-reported stress among adolescent siblings of individuals with autism spectrum disorder and Down syndrome. Autism: The International Journal of Research and Practice, 23(1), 112–122. https://doi.org/10.1177/1362361317722432