Walking with Owen

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By Walter Suskind

Parts of the story of my life with Owen will ring familiar to many people reading this. For the now almost 1 in 50 people diagnosed as Autistic in this country, there is often a brother or a sister who has been by their side since the beginning—and will be there for as long as they can foresee.

While we siblings may share similar experiences, the paths we traverse with our brothers and sisters is unique, in the way all sibling relationships are. Next to our parents, we know our brothers and sisters better than anyone. Just like any other person, they have strengths and weaknesses, just like any other person they have dreams and aspirations, and just like any other person they have good days and bad days. Too often though, the outside world struggles or chooses not to take the time to see and get to know the brother or sister we know and love.

When we were younger, the person sharing the attic with me was not like the brothers I saw when I went to my friend’s houses. Growing up, I didn’t know many other families like ours. While Owen and I could bond over the glow of Disney movies, we seemed to inhabit two separate universes. At nine years old, I didn’t have the answers on how to bridge that gap.

If I struggled to connect with Owen, I tried everything I could to make up for it by being Owen’s protector. That meant trying to shield him from taunts at the playground, help him navigate public spaces, and generally give my parents a hand however I could. Like a lot of siblings, that instinct to look out for and be that third parent was hardwired into me from a young age. As I’ve gotten older I’ve come to realize my attempts to compensate for feelings of helplessness by trying to protect my brother and be the child who’s not a burden to their family, is shared by a lot of us. And though I’m grateful for how those early years have helped to shape me, I wish I could talk to my nine-year-old self and let him know: there’s other siblings out there just like you, you don’t have to be perfect, and if you’re feeling confused and frustrated? That’s okay too.

I wish I could send back a letter to my nine-year-old self and let him know: there are other siblings out there just like you, you don’t have to be perfect, and if you’re feeling confused and frustrated, that’s okay too.”

As we got older, the walls of worlds Owen and I occupied began to dissipate. My nearly speechless seven-year-old brother grew, and I grew right alongside him. While Owen’s love of all things Disney continued to be a constant, his ability to communicate, which pretty much boiled down to “yes” and “no” responses when he was younger, had grown as well. Instead of just the two of us watching these movies, more and more we were sharing them and living them out in real time.

Owen’s love of Disney also gave me an avenue to help share my bother and who he was with my friends. I’ll never forget having my friends arrive at my house for a sleepover and feeling that familiar creeping anxiety as we headed towards the basement. I knew Owen was down there watching a movie, what I didn’t know was how my two friends would react to seeing Owen watching The Rescuers’ Down Under and doing silly (what we used to call his self-stim). Without hesitation, they grabbed some pizza, and spent the next hour and seventeen minutes talking all things Disney with the master of animation—my brother.

That master of animation isn’t so little anymore. We’re both in our late twenties now and over the years, Owen has worked to chart a path all his own. With the challenges he faces day-to-day, it’s a path that can, and will continue to a be, a rocky one. While people may preach acceptance and inclusion of people like Owen, if often feels like we are a long way from seeing that dream become a reality. As siblings, we can help change that.

Throughout our lives, my parents, like so many parents of Autistic people, have done everything in their power to make sure my brother has a place in this world. But a day will come when my parents won’t be there, and it will just be the two of us. The prospect of this makes me nervous; I don’t have the answers for what’s in store up ahead for me and Owen.

What I do know is that there are hundreds of thousands of brothers and sisters out there, each at a different point on their sibling journey. None of us has all the answers, but each of us has experiences and insights that can help other siblings as we work to advocate for and support our brothers and sisters.

Supporting our siblings on their journey is not always easy. There are times when we may not say the right thing or know the right thing to do. To our Autistic brothers and sisters, I promise you this is not intentional—we are doing our best. At the end of the day, this is your life, you are the heroes in this story. We are here to support you as your allies and advocates. But allies need support too.

The last two years has brought me in contact with siblings of all ages and from all walks of life. Meeting many of them for the first time, the conversations quickly slip into a familiar groove as talk turns to our brothers and sisters. We can all relate to each other stories, and we want to find ways to connect and support other siblings like us. We may not know each other, but Autism and the love we have for our siblings have bound us all together. Growing up, many of us didn’t have other people like us to share our experiences with. That doesn’t have to be the case anymore.

Walter Suskind is currently in the process of building an organization to support siblings of people with Autism and other disabilities. If you are interested in learning more about how to get involved (or just want to say hi!), please email him at [email protected].