Recently a friend who hadn’t seen us in a while came for a visit and started to tell me something, paused, said she felt awkward but now that she’d started she had to finish her thought, and finished by telling me my son Charles had greeted her with a big “Hi!” when she’d arrived and she had enjoyed that. That’s it. I was a little startled to realize that the awkward part in her mind, apparently, was making any explicit acknowledgment that my son has any communication differences and that it was somewhat unusual or new for him to confidently greet someone verbally.
I guess this is the disability version of “I don’t see color.” People think that it is somehow nicer, or at least more polite, to pretend not to notice anything different about my autistic son. Let me clarify. You pretending that his disability does not exist or that you don’t see it or that we shouldn’t talk about it just tells me that you think disability is bad and autism is embarrassing. That is not nice, or even polite.
Telling me you were happy to be greeted by him when you arrived, funny enough, IS the nicer thing to say. Yes, I know he doesn’t always do that. Yes, I know he is autistic. It’s okay to notice when he goes out of his way to interact with you. I notice it too and I enjoy it too. It’s not a dirty secret in my house that autism exists.
It’s ironic that this interaction would happen now, because lately I’ve been feeling a little sad. And a specific reason that I’ve been feeling a little sad is that I’ve been feeling like no one wants to talk about this. I’m autistic, and my son is autistic. We are proud to be who we are, but somehow no one around us ever talks about it. I’ve been wondering if they just don’t care.
I’ve been wondering if I talk about it too much, post too many articles. But part of the reason I do that is I am still trying to open conversations about autism with people who know us. They don’t want to have these conversations. They don’t respond. I’ve been wondering if anyone is even listening.
Recently someone close to us, who also hadn’t seen us in a long while, demonstrated that they would literally rather pretend Charles doesn’t even exist – not just ignoring his disability but ignoring HIM entirely – than make any acknowledgment or ask any questions or confront in any way the reality that he is autistic. This is painful beyond words.
I think sometimes that people would rather we just pretend that nothing is different about us, for their own comfort. Don’t say “the A word,” put our neurotypical costumes on, and make everyone feel more comfortable by going along with the fiction that we are all the same. Maybe we can go back to pretending Charles is “just speech delayed” like we used to. Maybe we can pretend I never told you I was autistic; after all, we pretended I was “normal” for 36 years didn’t we? The thing is, even if this were possible, and it’s NOT, I don’t want to.
I am not ashamed of being autistic. I am not ashamed that Charles is autistic. If you are embarrassed, check yourself. Your embarrassment is a big red flashing arrow pointing to your unacknowledged prejudice about disabled people. Say it out loud: “Autistic.” It’s not a dirty word. If you are afraid of saying the wrong thing, ask a question. Pretending to be “disability-blind” is far, far more hurtful. We just want you to see us, as we are.