I am a sibling of a 29-year-old brother with Autism Spectrum Disorder. When someone asks me about my experiences living with a person with autism, I say it changes over time. When I was young, I was a big sister for him all the time. He was supported by our family, had some good friends in school, and met amazing people who helped his development. However, compared to my childhood, I have more concerns toward my brother’s future. Seeing him growing up as an adult, I have a few unanswered questions. Who is going to take care of my brother? Is it going to be me? If so, what do I need to do in the future? How can I balance my own life and caregiving?

When both parents are deceased, siblings of individuals with Intellectual and Developmental Disabilities (IDD) may become caregivers.  A recent survey from 351 siblings of individuals with IDD indicated that about 23% of siblings were the primary caregivers for their brothers and sisters with IDD, while 1 in 3 were expected to take on the caregiver role in the future (Easter Seals, 2012).  However, many siblings reported feeling unprepared to assume caregiving roles.  Specifically, siblings who were the primary caregivers reported that it was like a full-time job to provide care for their brothers or sisters with IDD.  Moreover, siblings of individuals with IDD reported increased stress due to their caregiving responsibilities.  Almost 1 in 5 siblings reported that taking care of a brother or sister with IDD negatively affected their family relationships and quality of life.  Conversely, adult siblings reported close, strong, and rewarding sibling relationships compared to adults with typically developing siblings (Easter Seals, 2012).  Siblings have reported mixed feelings on their expected caregiver role in the future.

However, very little support and attention has been paid to adult siblings of individuals with IDD regarding current involvement in future planning, concerns, and support needs. Thinking about the growing population of older adults with IDD, there is a need for supporting those anticipated and/or current sibling caregivers of individuals with IDD.

Reference: Easter Seals. (2012). Easter seals siblings study. Retrieved from http://www.easterseals.com/explore-resources/siblings-study.html