My brother is 21 years old. He has a very diverse taste in music, ranging from LMFAO to Marianas Trench to Buddy Holly to Sesame Street. He loves basketball and hates loud noises. He’ll talk your ear off if you let him, but you may never quite understand what he’s saying.

My brother is autistic.

He was born with a variation of Craniosynostosis, where the plates of his skull were fused together (rather than being held slightly apart in a more normal newborn’s skull), changing the way his skull could develop as he grew. Before he was even a month old, surgeons opened him up and worked to separate pieces of his skull, giving him a chance at a more normal development. He had a pretty rockin’ headband of staples and, as my earliest memory of my little brother reminds me, wires taped all over his tiny body.

We’ll never truly know (and it doesn’t really matter) if that operation so early in his life caused or triggered his autism. All I know now is that my brother is different, very different.

I find myself automatically and unconsciously working to shield him from others. Earlier today, we were walking to the mall together and I guided him across the street away from a group of boys without even thinking about it. I only realized I had avoided them after I looked back across the street. He seemed, for the most part, blissfully unaware of what I’d done. Even without him around, I can find myself timid or afraid of others. Generally outgoing (to a fault at times), I still have moments of anxiety entering into conversation with a large group, wondering if they’ll judge me the way I’ve always felt my brother and I have been judged.

Sharing in the joys of friends and family with new babies and growing children, I find it easy to relate to these little ones but utterly confused at how they can complete such great feats of putting sentences together or sitting quietly with a book at, in my mind anyways, such a young age. My concept of healthy child development is out the window and totally out of whack – my brother may be 21 according to the number of birthdays he’s had but he doesn’t act anywhere close to his age. My friends and I often talk about being ‘young at heart’ and ‘not growing up’ as a positive thing in our carpe diem lives, but I carry that tiny ache of guilt and hypocrisy as I know, for him, acting younger than he is, is not, for others, a sign of a beautiful spirit but rather a broken mind.

Earlier this year, during World Autism Awareness Day, I said nothing. Because I’m tired.

I’m tired, like he is, like my parents are, of explaining away his differences and advocating for his sameness. It’s exhausting to live in a world where you can feel like everyone knows but no one understands.

I’ll tell you a secret. While I continue to assert, and rightly so, that my brother has taught me so much about life and love and the pursuit of happiness, he’s also shown me great pain and caused me to suffer. It’s a daily fight to reconcile loving him so much my heart could burst, but hating what he’s done to my life so much my heart aches. His unbearable lightness of spirit is a burden my family and I carry, making us stronger yet weaker with each day.

(Behind The Scenes)