Talking about you like you're not in the room

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“Is she autistic?” the woman asked my mom’s friend as I walked by.

I suspected she was talking about me, but I held out some small hope that she wasn’t. When my mom’s friend started to reply, “She’s my friend Cathy’s daughter and she…” all doubt was removed. I didn’t hear the rest of what she said because I left the room. I had no desire to listen to people discussing me and my diagnosis right in front of me as if I couldn’t hear or understand them. If they were going to talk about me as if I wasn’t in the room, then I was going to leave the room.

I’m lucky that I had the ability to make an exit. I’m not sure what tipped this woman off. Maybe my mom’s friend had been talking to her about me. Maybe it was my pacing and flapping that did it. The fact that she hadn’t heard me speak probably heightened her perception of me as seriously disabled. People who hear me speak or read my writing first tend to be surprised to find out I’m disabled in any way. People who see me pacing and flapping first tend to be surprised to hear me speaking in complete sentences.

This isn’t the first time something like this has happened to me. I’ve had people respond to my flapping, pacing and stereotyped movements by asking another adult who’s with me why I’m doing that. They ask the other person that question when I’m within earshot and eyesight. I know this kind of thing happens to other disabled people too.

Too many people seem to think being autistic or developmentally or physically disabled in some way is synonymous with being deaf or unable to understand verbal communication. When that belief causes them to talk about me as if I’m not there, it makes me feel invisible, inferior and dehumanized. It is rude, insensitive and inconsiderate.

I suppose I could have let that woman know I heard her and understood what she said. I suppose I could have told her she’d hurt my feelings. That may have challenged the notions she had about me and made her think twice about saying something like that again in front of someone she thought was autistic, but it would have been embarrassing for all three of us. I prefer to avoid confrontations with strangers whenever possible.

My therapist and my parents used to do that to me all the time. While I usually saw my therapist alone, once in a while, she'd ask for a "family session". That's when one or both of my parents would join in. During the session, they'd say "Aspie1 this" or "Aspie1 that" or "he this" or "he that", while blatantly ignoring the fact that I'm sitting less than 10 feet away. Whenever I tried to cut in, my parent(s) would shush me, and my therapist didn't correct them.

During the following alone session, I'd tell my therapist how awkward and uncomfortable the family session was. She'd always tilt her head to the side, say "aww!", and coo at me. (Same tone as most people coo at a 2-week-old puppy struggling to walk.) NOT ONCE did she ask what she can do to make the family sessions less awkward for me. That's when I realized she was my parents' flying monkey (enabler), and only saw me as her "Thursday night nutjob" to made fun of, rather than a vulnerable kid in need of help.

Who was paying her?