TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives.
Today’s story is from M. Kelter, about how listening—really listening—to autistic people about their experiences is a crucial accommodation, even when it’s a work in progress.
In 2005, after a long period of social isolation and depression, I began therapy and received an autism spectrum diagnosis.
I discovered early in this process that describing my internal experiences was easier if I wrote them down. After each session with the psychologist, I would go home and write out everything I could remember from our discussion. I would then read that “transcript” to myself several times, so that I could go into the next session with a sense of what to elaborate upon.
Basically, writing out our discussion functioned as a thought device that gave me greater access to my own experiences. And the psychologist, for her part, made an effort to keep our lines of communication as open as possible. She avoided cliched therapies and techniques; she never insisted that I accept an interpretation, or idea, that I did not like. She made listening her primary goal, which helped foster an atmosphere where constructive discussion was possible.
The following is an example of our exchanges.
August 2006
Doctor: I’d like to focus on some of what you said last week about interactions with others, make sure I’m getting a sense of this. With permission, I’ll use a metaphor.
M: (Nods)
Doctor: I was thinking about how, during conversation, most other people remain unaware of things that you have to constantly sort through and process. It’s a perceptual difference and I was trying to imagine what a social interaction must feel like from your perspective. When you talk to a person — it must feel like having a dozen radios playing at the same time.
M: I think that fits. The words a person says are always one small part of the discussion. Their inflection is another part. Their eye movements, hand gestures, shoulder posture, all of that is streaming in with equal intensity, along with the general surroundings: lights, ambient noise, etc. So it is like the radio thing. It’s noisy. It’s hard a lot of the time to know what I’m supposed to be paying attention to, what’s relevant to that particular conversation. I have to sift through all of the data and consciously keep track of what matters, and what doesn’t. There’s also “what a person says,” versus “what a person means;” relevant body language, versus stray movements … it’s all stressful; it all makes me feel tired.
Doctor: What tends to be most stressful?
M: I don’t know. I would say sensory input is the worst, the lights and all of that. That’s the most distracting thing. And I get really thrown off by … I don’t know what to call it. Persona issues. When someone puts a lot of effort into signaling how they want to be perceived. Sometimes it feels like people are trying to say one thing, but they take the long way around, and use too many descriptors. Does that make any sense?
Doctor: I’m not quite there. Can you think of an example?
M: Umm … I’m trying to think. Like expressions of status in a conversation. When someone is saying one set of things…but really saying, “I’m important.” Or when they’re indicating membership in a particular social group.
Because I look so hard for what a person is saying, overt expressions of meaning can be incredibly intense. I get bothered by distinctive clothing for the same reasons. Clothing choices often repeat a lot of the information you hear in conversation. There’s nothing inherently wrong with style choices, it’s just more data to consider, more radio stations playing at the same time. I was at the receiving end of a monologue from an employee at the organic food store the other day. She had an alternative kind of look … like, a look a lot of the employees there had with their hair style and clothes and all of that.
M: (Pauses, chases thoughts around, tries to recall the memory.)
M: I needed help finding an item in the store, so I asked her about it. She pointed to the location. Then she mentioned a few things about general organic produce issues … then she switched to consumerism, environmentalism, world hunger, and so on. She described all of these food-themed documentaries she was watching. And it was exhausting because her clothes, her look, each statement … it was all a repetition of the exact same sentiment. “This is who I am. This is who I am.” She wanted to convey her values, and I know she was sincere about these things, but it was too much. Many fewer sentences would have been enough.
Doctor: What’s interesting to me is that, after we spoke last week, I was thinking about how difficult it can be for you to see the “big picture” of a conversation. But what you’re saying is that, some instances, the opposite happens. Meanings can be so apparent and clear that it’s almost a distraction from what’s being said. Using the radio metaphor … social data can be very loud sometimes.
M: Yes. I mean, that’s the weird thing; there tends to be this constant imbalance. Sometimes I pick up on a lot of stuff that is irrelevant … random vocal inflections, statements unrelated to the overall conversation. Other times, I’m hit really hard by the relevant statements … I hear the core thing so intensely that I’m no longer able to process the overall structure of the conversation. That employee at the organic store … I heard her perspective instantly, so I wasn’t able to follow her words after that. I shut down; felt blank, exhausted.
Doctor: Which is an okay reaction to have. Any time someone talks your ear off, it’s exhausting.
M: That’s true. She talked a lot, anyone would have felt overloaded. But I use an extreme example because it gets at something that happens all the time in normal, every day conversation. I just get really shut down around people because so much of what we say … I don’t know. Everything is always shifting and inconsistent. Does that make sense?
Doctor: It makes sense.
M: In some cases, I have trouble understanding the structure of a conversation — the flow of sentences — because it gets overwhelmed by the meanings it contains. In other cases — and this is what happens most of the time — I’ll hear the structure so intensely that I can’t figure out what’s actually being said. The words are camouflage. It’s back and forth like that. Social stuff never seems to settle. It’s reliably confusing, and it had made connecting with people this impossible thing that never happens.
Doctor: (Looks off to the side, pauses for a bit)
M: It’s frustrating, I’m not saying that very well.
Doctor: No, I hear you. I’m just…
Doctor: (Continues to pause)
Doctor: I’m reviewing the different pieces of this. Small talk is basically filler: It can lead up to more meaningful conversation, but it contains little information in itself. To use your words, it’s weighted toward the structure side of conversation instead of the meaning side. In the radio metaphor, small talk would sound like static. It’s just noise that covers up the meanings. This woman at the store … she went to the opposite extreme. She bypassed small talk, went directly into statements that contained information about her personal values … it was like suddenly hitting a radio station that was too clear, too loud.
M: Yes. That’s Right.
Doctor: (Nods, thinks)
M: Why did you create the radio metaphor?
Doctor: What do you mean?
M: Well, I describe things as clearly as I can. I’m just curious why you created the radio metaphor. It’s not a problem or anything, I’m just … I don’t know. I guess I don’t understand the purpose of developing the metaphor. I figure, with you, I can express that fact. Most people, I’m never able to tell them how confusing they are.
Doctor: So, I would say there are two reasons I thought of this metaphor. One, it’s just a way to help myself organize the information you’ve been providing me. Your descriptions are very clear, but I also like to step back, create concepts that help me to piece all of the different facets together. Metaphors … for me … are helpful in that regard.
M: (Nods)
Doctor: The second reason is that, by creating this metaphor and describing it to you … I’m working to establish a shared language. With a shared language, I feel like I can signal to you that I am listening, understanding. Normally, I convey those things with “listening gestures,” like eye contact, or nodding. But I think you find body language to be artificial. I don’t think you trust it.
M: (Doesn’t say anything)
Doctor: The radio metaphor allows me to use words, which I think you trust more … on the condition, of course, that they are stable and reliable. It’s related to what you just said: “Social stuff never seems to settle.” That’s really the point of the metaphor. I want my words and my phrasing to feel “settled” for you. I want the conversation to stay in your comfort zone.
Doctor: (Waits. M. doesn’t say anything)
Doctor: I, uh … I don’t know if it accomplishes that goal, the metaphor. I’m experimenting.
M: Okay.
Doctor: It’s okay?
M: It’s okay.
