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Autism: Through the Lens of a Sibling

Author Katy Kollar
Date June 27, 2019

Today, I share the sentiments of my son Cam, whose brother Owen now lives in a full-time residential setting at Anderson Center for Autism in the Hudson Valley region of New York. It’s been quite a journey for our entire family, and as a parent ambassador for Anderson Center for Autism, I feel it’s important to shed light on what siblings experience. To say I’m proud of all my kids is an understatement!

Here, Cam’s essay, to give you a sense of the unique perspective of a sibling to someone with Autism:

My sister graduated in 2011, I graduated school in 2016, and my brother, who is the youngest in my family, graduated in 2012. You may ask how could this be. My brother left the house before I did to attend a school that would help improve his quality of life and teach him what he could not learn at home. This became his new home. He learned how to socialize more, and his new teachers taught him new skills that we were not capable of showing him. Owen went to live in a house with other kids just like him. This was very difficult for my whole family. In particular, I had trouble adjusting to Owen’s departure because I felt I should have been the next one to leave the house. Realizing that Owen was never the cause of the trouble gave me a sense that I needed to start maturing and become a responsible person.

My brother Owen has autism. Owen has always been our primary focus. We all worked as a team to make sure that he was not upset, that he had his bagels, and that he had his iPod. When Owen lived at home, we were not able to focus on other matters happening in the family. We had to focus only on Owen’s needs. The first time we went out to dinner after Owen left, we fought over the tiniest things that should not have mattered. My sister said, “Maybe we can’t function as a family without Owen, because we are always focused on him.” And it was true. It became clear to me at our first dinner without Owen, the family needed to learn how to become a family again. When Owen was around, my family never had time to interact with each other. We did not know how to be nice to each other or even talk to each other. Now, we had to enjoy being a family without Owen. We thought that Owen was the tough issue because of his struggle with autism but a bigger issue was that the family did not cooperate as much when Owen was not around.

With Owen’s absence, my family needed to learn how to reconnect like a team again. We needed to learn how to achieve new goals, take on new challenges that did not involve Owen. Occasionally we tried new activities as a family that we could not have done with Owen around. Now, I can work longer hours, join the volunteer fire department and spend time with others; I was not able to do much when Owen was around but now I can.

However, even though Owen is no longer around, I still want to stay connected with him. That is a continuous challenge for me. Whenever the whole family goes upstate to visit him, I’m always glad to go along because I love seeing my brother. We always go to Rhinebeck and get pizza.  When it’s time for us to head back home, we drive Owen back to school. I walk close to Owen and he always grabs for my hand to hold and I hold on to his hand. I give him the biggest hug I can ever give to him, when it’s time to say goodbye. Realizing that Owen wasn’t the cause of our trouble made it clear to me how the world works, I started to mature into the person I need to become, which includes but is not limited to being a brother.