The life of an individual with a disability can be very small for a variety of reasons. For the lucky, the family plays a key part in that small world, including siblings. From childhood on, in a family where disability is part of the everyday reality, the sibling bond plays an important role. Supporting siblings, in all phases of life, to be an ally to their sibling with a disability is key.
For many people with ASD and other developmental disabilities (for the remainder of this document this will be referred to as ASD/DD), parents assume a caregiving role that lasts longer than is typically expected. As many of these parents age, significant responsibilities can often shift to the siblings of the individual with ASD/DD. These siblings, may lack the resources, knowledge and support to be the best possible ally to their brother or sister if they choose to assume roles once held by their parents. With autism diagnoses rates in the U.S. at approximately 1 in 59, the coming decades will see a growing number of siblings of people with ASD/DD be called upon to take on responsibilities of support and care. More than ever, it is crucial that siblings of people with ASD/DD are prepared and equipped to serve as allies, stewards of broader societal engagement and if needed, support their siblings to help them to live the life they choose.
While support for siblings of people with ASD/DD is crucial at all ages, engagement during childhood, adolescent and teenage years is critical in normalizing the sibling experience and creating a foundation for a lifetime of support. As was found in a 2003 report entitled, Sibling Relationships When a Child Has Autism: Marital Stress and Support Coping, “Access to social support has been related to positive family and child outcomes in families of children with a variety of disabilities.”
To that end, the goal of SibStrong is to offer education, resources and networks that siblings of individuals living with ASD/DD and their families can begin utilizing from a young age and continue to connect with at every phase of life. SibStrong seeks to be an engaging and modern sibling network that enables siblings of all ages to receive the support and resources they need to be the best ally to their sibling.
I am the 30-year-old brother of Owen Suskind, my autistic brother and a large part of the reason I started SibStrong. Growing up in Washington, D.C. I knew few other siblings of people with Autism or other disabilities. While my experiences being Owen’s brother have shaped me in profound and beneficial ways, there were many times when I was younger, and still today when I struggled with my role as the brother of someone with Autism.
Two years ago, Owen and my entire family’s experience was chronicled in the Academy Award nominated documentary, Life, Animated, that told that told the story of how our family used Disney to connect with Owen and showed Owen’s journey into young adulthood. Following the documentary’s release, I heard from siblings from across the world about their similar experiences. Hearing from so many siblings I decided to start SibStrong in an effort to connect siblings of all ages and prepare and empower us in our unique roles.
If you would like to learn more about our family’s story I would encourage you to watch the film! It is available to rent on iTunes and can be watched for free on Amazon Prime.