What does it really mean to be a sibling of autism? To wake up each and every day knowing that someone in your family is different, abnormal, weird. It’s a question I’ve spent most of the last 12 years trying to answer.
My brother Tyler (b. 1998) was diagnosed with ASD (Autism Spectrum Disorder) in 2003. Like many older siblings, especially early on, I didn’t understand why my brother behaved differently. I didn’t understand why he hated crowds, would scream and yell at the drop of a hat, and didn’t act like my friends’ little brothers; and my treatment of him showed it. When understanding is not present, it is easy to lash out. I would pick on Tyler incessantly, teasing him with loud noises and making little to no effort to understand that his behaviors were not his fault. For a long time, I was ashamed of him.
For siblings of autism, knowledge is the crucial stepping stone to understanding. Parents must talk to their other children and let them know why their brother or sister acts differently, why certain aspects of family life cannot and will not ever be “normal”. These talks are difficult for both sides. As an older sibling, the responsibility falls on you to mentor your younger siblings, to teach them all the things mom and dad don’t want them to know, and form the infamous “kids vs. parents” dynamic to have as much fun as possible. But with Tyler, things were and still are different. No, we didn’t have a “normal” upbringing and yes sacrifices were made to accommodate him. But as he’s grown, as we’ve all grown, Tyler has not only shown incredible inner strength, but he’s proven to be my greatest teacher and confidante.
It’s funny, most people who’ve never known someone with autism in their family would think that the individual is a drain, someone to be pitied and taken care of, cursing the family to a life of accommodation and non-tradition. But, after 16 years of living with Tyler and nearly 10 years working and volunteering as a counselor and mentor to other children with ASD, the most important thing I’ve discovered is this: Tyler has done more for me and for this family than we could ever hope to do for him. Understanding Tyler took a long time. It took a lot of effort and self-inventory on my part and even today, I make mistakes. But this process has given me an inner strength, a quiet dignity and commitment to responsibility that I would not have found without him. He taught me the true meaning of compassion, to take peace and solace in the little gifts bestowed upon us each and every day. The man I am today, I owe to Tyler.
So what does it really mean to be a sibling of autism? It means waking up each and every day knowing that your sibling was put into your life for a reason. That the hard times are not a punishment, but a lesson, a lesson in responsibility, compassion, and understanding that your sibling wants nothing more than to enjoy life. My brother has touched the lives of anyone and everyone who takes the time to get to know him. These people see past his deficiencies, his quirks and into the beautiful soul beneath. They see a smart young man who loves his family, loves his routines, and has so much to bring to this world. To them, he’s not Zak’s brother with autism. He’s just Tyler. Just Tyler, and so much more.
This was great personal story. I agree that sometimes the greatest teachers are the people who are different than you and make you change the way you see and think about life. You seem like great brother who sees Tyler not as someone different but just another person living his life. I wish that more people would come to that understand also.
Inspiring message, Zak. You are correct that understanding someone leads to having more compassion for them. When you begin to see the world how they see it, you are less critical of their behavior and more in tune with their needs. Your family life has been different than most, but I can tell that it was for the better.
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