My husband, Keith, and I spent a good part of our early adulthood traveling around the country and following the Grateful Dead. Between the two of us, we have been to several hundred shows, and fondly remember (or mostly remember) our beautiful and crazy experiences bouncing from east coast to west with a splendid community of hippies.
As parents, we wanted to share our love of all things Dead with our kids, and as a result, our children have been to a multitude of music festivals and have had exposure to every Grateful Dead cover band that has come into our orbit. One of our favorites is Dark Star Orchestra, and we made it an annual event to see them at their yearly 2-night performance in Black Mountain every summer.
In August of 2016, we arrived at the venue a bit early. We set up our blankets and chairs, hit the food trucks, hugged friends, and settled in for the show. It was quite warm, so it wasn’t too weird when a woman came up to Raimee and handed him a bottle of water. It was a little strange that she shot me a dirty look before going back to her spot. About 30 minutes later, this happened again. “Thank you so much,” I say, “we have plenty of water, but that’s really nice of you.” Again, the look. Hmmm?
An hour or so goes by.
Our group is joined by a smiling young man who puts his arm around Keith and whispers, conspiratorially, into his ear. “I’ve been watching your friend;” he nods towards Raimee. “I see the way he is smiling and talking to his burrito. I just want to let you know that I am in the same place, man. I am having a great time, and just tripping my ass off.”
Keith laughs. He calls me over. “Oh!” And I laugh. “Ugh. Of course.”
Keith explains to our new friend that our son has never done a recreational drug in his life, that he has autism. The guy stops smiling and, for a moment, looks horrified. “I’m so sorry. Oh, I’ve just hit a new all time low.” Keith puts his hand on his arm and says “No worries. Really, we should have been expecting you.”
We have become so accustomed to Raimee and his unique way of processing and interacting with the world, that we forget how that might look to others. And how, in certain contexts, his presence is received and interpreted in ways that are in absolute opposition to his true self.
The following year for the concert, I made Raimee a t-shirt that read “Sometimes I talk to my burrito. It’s ASD, not LSD. Let’s educate ourselves about Autism Spectrum Disorders.” Raimee wore it so much that the ink wore out. As we head into 2023, and a new year full of live music and festival opportunities, I had some new shirts printed up for him, as well as a few extras for others who, like ourselves, often find themselves in environments where it might be easy to misread our loved one’s way of being in the world.
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