In recognition of World Autism Awareness Day, I want to share my personal experience as a sibling of someone with autism. Among the many worries parents of children with autism experience, I am well aware that the question of how their other children will be affected is a big concern. I’m here to let you know that yes, it will affect siblings, but not necessarily in the way that parents worry it will.
Whenever someone learns that I have a brother with autism, the usual reaction is a question along the lines of, “How has that affected your life?” I’ve always struggled with answering that question. When I was younger, I would respond by simply explaining that I couldn’t keep magazines around the house because my brother, Alex, loved the sound and feel of tearing them apart. That was always the only answer I could give: “No magazines.” Adults often looked at me strangely, as if they were wondering why I couldn’t understand the many ways my life was different.
There are several reasons I did not have a more elaborate answer. Part of the reason, of course, is that Alex is my older brother. I never went through a familial shift like that experienced by so many kids who have younger siblings with a disability. To put it simply, autism has been a part of my life since day one. Alex is simply Alex, just like my brother, Eric, is simply Eric. Both of them were in place before I arrived on this planet, and I never envisioned them being any different than they are.
Another reason I never had a long explanation is because I never thought that the challenges my family faced were really all that different, or more difficult, than the challenges that any other family faces. Sure, my family’s challenges were unique when you looked at specific incidents, but in my eyes, every family had their moments of frustration and their own accommodations to make. No two families I knew had the very same living experiences. Each family and each person is unique, yet when it comes down to it, everyone experiences joy, sadness, triumph, and hardship. Living in a family means sharing and working through those experiences with each other.
I realize now that the perspective I’ve just described is one of the ways I have been affected by my brother’s autism. When you grow up closely with someone who has a disability, particularly one like autism which can have so many stigmas associated with it, you learn to embrace similarities rather than differences. I have been raised to accept everyone’s differences as just a part of who they are. When asked about my life, I never told people that full, uninterrupted conversations were rare in my house, or that at a very young age, Eric and I had to be prepared to look after each other on a moment’s notice in case my parents needed to take care of Alex during a “meltdown.” Instead, I’ve always viewed those experiences as positive ones through which I developed patience, independence, and maturity. If I was asked today what effect Alex’s autism had on me, I would still give a short answer, but it would be: “Opportunity.” Alex’s autism has given me the opportunity to meet and know people for who they are, to see and understand others’ viewpoints, and to develop personal qualities of my own.
Autism Awareness Day is extremely significant because, to me, it’s a celebration of how far we’ve come. When Alex was born 26 years ago there were few resources and little information that gave families of autism support and guidance. I witnessed many expressions of judgment, confusion, and fear in response to my brother’s actions when I was young. Many of those comments and looks were simply due to a lack of knowledge about and awareness of autism. In the past few decades, there has been significant progress in research, resources, and overall awareness. Disability resource organizations, like PYD, have given families with disabilities the support they need to feel prepared for challenges they may face.
Spending my AmeriCorps service year with PYD has given me an even different perspective on disabilities. I am now able to help families as an outsider providing resources and advice. Having grown up in a family with autism, I know how important it is to have a support system. I’m grateful to be able to be a support not only for my own family but several other families as well. So, let’s spend the month of April sharing our stories, advice, and knowledge to make our community an inclusive one that accepts people of all abilities!