Navigating Sibling Dynamics with Disabilities

As a young child, I visited a museum that told the story behind Eunice Kennedy Shriver’s founding of the Special Olympics and the inspiration her sister, Rosemary, was to the organization’s establishment. How wonderful, I marvelled to have a sister who loves you so much that they started a nonprofit that serves people around the world because they want people with similar challenges to have access to opportunities  you did not. Culturally and socially, we are told that siblings are built-in best friends. There are challenges when one sibling struggles with a disability, and I expect that was the case with my siblings and me. I can’t speak to their experiences, but from what I have read, the sibling with a disability tends to need more attention, resources, and time. I know that I was an anxious child and required a lot of soothing at times, but I don’t know to what extent my brother and sister feel that it negatively impacted them throughout the entirety of our childhoods. I do remember, at a very young age, observing that my two siblings seemed very bonded, and there didn’t seem to be room for me. To what extent my undiagnosed autism played a role in my inability to understand the interpersonal dynamics that are crucial for building strong bonds with siblings, I don’t know and never will. I would guess that it played a significant role, and I’d be curious to discuss sibling dynamics with neurotypical siblings who have an autistic sibling who was diagnosed at a young age.

As we grew older and entered public school, I went to the local middle school, and they went to the local elementary school. This change meant we had less time together overall, but they still saw each other more during the day than I did. As I found navigating the social dynamics of middle school and then high school complex and stressful, I looked to my relationships at home for the support and belonging I often didn’t find in my peer group. While I had friends, I didn’t have the deep sense of belonging that I longed for, and I thought I could and would find that in my relationships with my brother and sister. They weren’t unkind often, and there were moments of warmth, but they were busy with their own lives. The moments I viewed as unkind back then, with maturity and time, I now know were those of a fellow teenager trying to find their way. As an adult, I know it wasn’t fair to put that pressure on those relationships. I still felt acute disappointment and pain as they each became busy with their own lives. They both did marching band in high school, and that served as a further bonding experience. band members would go out to Waffle House late at night after competitions and share war stories from practices. Each of them had seemed so much more socially advanced than I was in high school.

Stereotypically, the oldest sisters are portrayed as know-it-all protective types whom the younger siblings secretly look up to, even though they try to make their lives miserable. My siblings never plotted to make my life miserable, and I spent a lot of time wanting to be like them. I wanted to feel as though I had enough coordination to do an activity like marching band. I watched each of them reach teenage milestones years before I would, such as a first date or getting a driver’s license. I wanted to be part of the cool kids’ club where milestones like these came more easily. The confidence they each had seemed to carry them well into college with well-established friend groups and confidence in selecting a major. Just like getting my driver’s license and going on my first date, my confidence arrived later as well.

The years have passed, and I’ve been waiting for the relationships to arrive at the point I always wanted them to since childhood. As a child, I remember wanting a close sibling relationship and crying when I told my dad. He confidently and soothingly said that if we all got older, it would get better. A lot has gotten better; there are no longer physical altercations in the backyard over who gets to use the swing. I can talk to my brother about sports. This past year, I’ve learned about football, and I enjoy watching basketball and soccer as well. My sister and I have more in common than we did when we were teenagers. There is still a distance that I’ve been meditating on and a question I’ve been thinking about when it comes to children who have disabilities and their siblings, is what happens if the impact the disability has on the family dynamic permanently creates distance and is it possible to have fucntional relationships between siblings where everyone is confortable expressing conflict when one sibling has had higher or different needs than the others?

I don’t mind having autism, but those around me might mind that I do. I don’t say this with any self-loathing. This is a matter of curiosity. I’ve often been told we don’t get to pick our family, and that’s accurate. Would my siblings have picked an older sister with autism? I’ve started to wonder whether the distance stems from the fact that, as adults, they can choose how much to interact with their “special needs” sibling. This question isn’t just about my family and me. I’ve often wondered what supports could be provided that would make the childhoods for siblings of those with disabilities more balanced and allow those children to feel like their needs are as important, if they feel like they have to minimize? Is it a common problem for someone with a disability and their siblings to have distant or even strained relationships as they get older? Because I struggle with nonverbal cues and social situations in general, like most people with an autism diagnosis, a camp where my siblings and I went to learn how to interact and communicate as children would have been helpful. Giving families the tools to navigate the complexities of living in a world that is not built for one of their family members is essential.

I was recently speaking with a disability advocate whom I really respect. We both agreed that being disabled doesn’t have to be painful. It’s the treatment that results from how people with disabilities are treated that causes pain and can lead to suffering. Unfortunately, this means that there can be increased challenges for those around the individual who has the disability. I also want to say that I do not blame all my familial relational woes on my autism. I know lots of people who have complicated sibling dynamics, and disability doesn’t play a part in those relationships. I do hope that by sharing a bit about my own family dynamic and the role I believe my autism has played in my ability, or lack thereof, to develop the kind of sibling relationships, it will help other people with autism feel less alone. I also hope that those who are the siblings of an individual with a disability will find the support that they need if that’s something that’s lacking, and find ways to interact with their loved one that is healthy and meaningful for them.

If anyone reading this post has gotten to the end and is waiting for me to make a judgment on the current state of my relationship with my siblings in detail, or to begin apportioning blame and rehashing various slights on either side, those conversations, opinions, and experiences are either for a different day or most likely to stay private. I’m focusing on my professional development, building a support network, and discovering new hobbies while we all find our way as adults. I don’t know how my relationship with them will develop over time, and I’m open to it growing closer, but I’ve also accepted it might stay the way it is or become more distant. All I can do is make the next right choice in life. Isn’t that all anyone can do?