My Big Brother Casey, Blackberries, and What People Get Wrong About Autism
A friend once asked me if I had ever considered what my life might look like if Casey wasn't my brother. She asked because she has a child with special needs, and she wasn’t sure what bringing another child into her family might mean for that second kid. Would everything be okay?
Casey, whose official diagnosis is “high-functioning autistic,” is 11 months older than me. He’s my big brother and an avid collector of cookbooks. Before that it was Kleenex boxes or lamps or candles. He’s had a flat top since 2002. He’s painfully frugal with the money he makes as a cashier at Wendy’s. He’s an impassioned dog owner and a bit anal-retentive about locking the door when we leave the house. In that non-exhaustive list of things that describes Casey, sometimes I forget that “autistic” is in there.
My friend would never mean to imply that Casey was a burden, but that’s what people unintentionally do. And I suppose to an outsider, it's within reason. Casey lives at home with my parents in Tennessee. One day, that baton will be passed onto me, and the list of monikers-big brother, Wendy’s cashier, designer tissue box enthusiast-will grow by one. He’ll become my roommate or neighbor or whatever our living arrangement suggests. That's not just my normal: With the CDC reporting that the national rate of autism diagnosis rose from one in 69 children to one in 59 children in two years, situations like mine will increase. And according to Autism Speaks, the vocational training for autistic people is abysmal at best. Of those who have employment, 80 percent are working part-time to bring home a median weekly rate of $160. These statistics are symptomatic of a system that is inflexible to caregivers and flippant toward adults living with autism.
My life would be different if Casey wasn't autistic. I would be among the majority of 29-year-olds who haven't had to consider what late-life planning looks like for their sibling. Without that undercurrent of responsibility, I might have partied more in high school. I might have applied to colleges further away from home. I might have done a lot of things.
But with all those "mights" and statistics, Casey isn't a sheet of hypotheticals and facts. He's my brother.
In response to my friend's question, I answered that my life would be worse without Casey. It’s an answer you rehearse when you’re within the orbit of a person you love who has special needs. It’s also the response people expect, in the same way that you’d answer “very well!” when someone asks how you’re doing. But as I left breakfast that day, I considered what life might have looked like untethered. What might have happened in a world where Casey wasn't...Casey.
One summer evening over 20 years ago, Casey and I went blackberry picking with my dad. We had been out in a clearing about a half-mile from our house for a couple hours, each of us equipped with a gallon bucket, hunting through thorny bushes. There was something hypnotizing about staring into a briar abyss, searching for a hidden blackberry you’d missed. Before I knew it, the sunlight had faded and the sky had turned that cool lavender color that happens before night sets in. I turned around and looked for my dad, but he was gone.
More often than not, I fell into the older brother role growing up. I made sure Casey had his things for school, and we’d eat lunch together almost every day until we graduated. But I’m a tragedy in crisis. I panic, because if it feels like the end of the world, then it’s probably the end of the world. Approximately four emphatic cries out for “Daddy!” later, I was sure that this was our end. The coyotes would come and eat us, and then they’d eat our blackberries for dessert. I crumpled on the ground and cried, because I knew there was no way I could navigate Casey and me back to our house through the woods.
Meanwhile, Casey paced next to me, widening his eyes and clapping his hands, interjecting with the occasional, “Oh great.” Casey wasn’t non-verbal, but he wasn’t the chattiest brother growing up, either. He turned to me and said, “Let’s go home.” Go home? Could he not see that I was very clearly having an emotional breakdown, the first of many to come in my life? Could he not see the damning reality through all of my tears, that I couldn’t save him from inevitable coyote death? I was the big, little brother. I was supposed to protect him. I said, “I don’t know how to get home, Casey,” and he said, “I do.” He took off into the brush, only to be stopped by my dad, who had been laughing behind a tree.
I was furious. Casey was, unsurprisingly, unbothered. My dad asked us to lead him back home. I couldn’t get us there. But at every turn, Casey knew the way. This tree was a guidepost and that fence post looked familiar. Casey had been paying attention, while I had been mad that I was even out there in the woods picking blackberries in the first place. Now, at family get-togethers, my dad has a couple beers and tells everyone about that time he made his sons think they were lost in the woods. He always ends on the part when I cried in an open clearing approximately 2,500 feet-no more than a few city blocks-from our house. But I think we should tell the whole story: the one where Casey led us home.
Casey spent a lot of time saving me growing up. More than he'll know. Yes, there will be different challenges that come with being the brother of a man with autism. There might be some unexpected costs or complicated living arrangements. But I've already learned about patience and humility-not because I was forced to adapt to being the sibling of an autistic boy, but because the autistic boy had strengths that would never come naturally to me.
I live approximately 713 miles from the address where I grew up. Casey still lives there and knows those woods better than I could even imagine. This year, he’s supposed to come and see me in New York for the first time, which is quite a feat for a kid who was often overwhelmed by the volume of people at school assemblies. He continues to grow, and in turn, pushes me to grow. And when the time calls for it, we’ll find each other and make our way home.
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