There is so much I want to write about, but I want to be respectful of other people’s wishes and share something that would make someone uncomfortable. So I will revert to a topic that was asked of me a few weeks ago on my Facebook page:
I’m curious about communicating with you. I saw you around Trillium when you and my son went there, and didn’t know anything about you. Then when I was in Aikido, I heard that you had won that contest and won a trip, totally based on something you had written. (Soooooooooo incredibly impressive!!!) Since then I’ve seen you at the river and stuff a few times, and honestly have felt like a jerk for not directly saying hi, but I’ve still not been totally sure if you’d be aware I was talking to you. Clearly you are. I’m just not sure what to say beyond hi I suppose, when I’m not sure if you have a way to respond? Do you always have a letter board with you? Even at the river? Do you ever have conversations with people randomly when you’re out that way?
I love this question for so many reasons! First, I know that my parents tried hard to create relationships in our local neighborhood with providers of services that everyone goes to. So I don’t go to an “autism dentist,” I see a great dentist who happens to have a patient who uses a letterboard and they worked with me like they do with anyone who is nervous about pain. For years, I went to a woman whose English was not great, but she was exceedingly kind and gentle when she cut my hair, and didn’t make a big deal about me wearing headphones when she used the clippers around my ears. I even learned how to sit still while the medical assistant irrigated a year’s worth of ear wax while my mom oo’ed and ah’ed over the quantity. The thing they had in common was kindness. It reminds me of something I used to hear my mom say when she was looking for people to come work with me. She said that she preferred people with no experience in autism because then she wouldn’t have to spend a lot of time trying to get them to unlearn what they thought they knew about autistic people.
Another thing I like about this question is the presumption of competence you so clearly see in me for which I am grateful. I saw your hesitancy at the river a couple times, and it reminded me of the kids in class or the hallways who would look at me fleetingly or nervously, like a little startled rabbit, unsure of what to say. It was more about their uncertainty than any assumption of whether I would have a response because by then the school knew that I heard when people talked to me, but I lacked the response mechanism that most people had. But it was no big deal – they changed their expectations based on my ability to respond, but that didn’t mean they stopped trying.
So what I guess I’m saying is this: say hello every time. Say it from that golden light that burns with kindness in your heart’s recesses. Model that kindness and assumption of my hearing you for the people around us who don’t believe it because you are advocating for me in these moments with that friendly greeting. Let my lack of obvious response BE the response you expect, and enjoy the little ways I show I heard you, like splashing a little or laughing more later or just being okay with me as I am. I do hear your kindness with every beat of my heart.