For the rest of the year, over and over, that's all we talk about: body language, cues, signs, symbols, people. De-coding the social.
January 2008.
After finally meeting some people, hanging out with them, I go in and describe it all to The Doctor. She listens, asks questions, probes around for details. She sits and thinks.
Doctor: So it was just a lot of sensory input, all at once. Cell phones, video games, television, computers, music, discussion.
M: Yup.
Doctor: Ugh. Did you play the video games?
M: I tried. It was good comedy for about five minutes. After that...after my character had gotten stuck in a pond for the 8th time...they took away the controller. I really couldn't participate in any of the stuff they were doing. I tried to sit there and look interested...but I don't like watching football with people. And I get confused when people are text messaging and conversing at the same time. I don't know. With the video games...I'm not averse to that. I've done that in the past, but the systems are so complicated now, I was clearly in over my head.
Doctor: I've had this image in my mind of what an average day is like for you. And I've always pictured a very low stimulus environment. You're alone most of the day. Low-lighting. Not a gadget person. Not having televisions and radios going all at once. Something like that, right?
M: Right.
Doctor: And the other day...it sounds kind of terrible.
M: It was absurdly high-stimulus. I can't even talk on the phone if someone else is in the room; I get too distracted to focus. And these guys were immersed in gadgets and noise. They were able to carry on four different conversations simultaneously...
Doctor: Which is rude.
M: To be honest, it didn't seem that way. They weren't doing these things and ignoring me. They were very successfully managing all of these various activities. It was just...
I pause, try to put the words to it.
M: The mentality. You could see that they were very comfortable with all this. It was their norm. For them, conversations in different formats are not mutually exclusive.
Doctor: People can be like that now.
M: That's what hit me. I was freaked out and I was asking myself, "What specifically is stressing me out here?" And when I thought about it...it was all things that are completely normal. People just...do this sort of thing now, surround themselves with constant sounds and sights and communication.
I pause, tugging the corners of my hair.
M: I know consciously that I haven't been around New People in a long time. But...yah, it really hit me. I am really out of touch.
Doctor: I saw a kid the other day, a client...he was telling me that his favorite game is bowling. And I asked where he goes to bowl, and he said, "Home. Duh." He has one of those motion-control systems...what's it called?
M: The Wii?
Doctor: That's it. To play, you have to move your arms like you're really bowling and that's what he likes. And I asked him: "Wouldn't you like to try out a real bowling alley?" And he looked confused. He thought about it and said, "But why would I do that? I have a Wii." It was like, "Hello?"
M: It's kind of disturbing.
Doctor: It is. I like that there's a physical activity component involved, but still. The way we place ourselves in this constant stream of distraction...it's like we're shutting out any sense of self, trying to stay away from that. This couple you met...sounds like they have that wall of distraction going.
M: They do, but it's not the way it is for most people. Like my parents, they have the television going all day long, full volume. They like to absorb in it the way you are describing. It's all about shutting down. This couple...they're surrounded by distraction, but they thrive on it. It seemed like they were actually engaging with the various activities. You know? Texting, talking, listening. It wasn't a blanked out kind of situation. Again, it's just...some people are like that now. Hi-tech. Immersed in all of that.
D: Huh.
M: I just wasn't prepared for it because of the way they're so verbal. Like...I'm verbal. For me, that means the conversation is important...that's what you focus on. They're verbal, but they can multi-task, do other things at the same time. They're a weird combination of introspective and extroverted. It makes no sense to me.
Doctor: Was there any...
She pauses and thinks for a bit. Then she holds her hands up, palms out. She does this from time to time, so I know the gesture. This is: "I'm about to be diplomatic". This is: "I come in peace".
D: Are you telling them anything about yourself?
M: I'm participating in the discussions. That involves sharing some things. I talk about...you know, my interests, thoughts.
D: Anything else?
M: We talk mostly about books...movies...theory.
D: I'm referring to personal information.
M: Tacos. We discussed tacos. Very much a "personal information" discussion. My thinking is that, really, the only benefit to a soft shell taco is that you can fold up the ends of it and keep the filling in. With a hard shell taco...the texture is way more perfect, but you have to contend with the filling-distribution issues. The shell cracks...you lose the filling. Bite it the wrong way...the filling falls from the other side. So that was a whole discussion where I opened up. Laid out my position on the "texture versus structural integrity" issue.
She goes into statue-mode. No response. It kills me that I can never get her to laugh.
She waits me out. I wait her out.
D: M.
M: Doctor.
D: You've tried keeping it all in before. Through most of your life, all through college, you kept all of that confusion and pain to yourself. You cannot do that again.
M: I think I've done pretty well with them. I haven't been lapsing into marionette stuff. I'm not mirroring their conversation.
D: Okay. That's good. But one of our goals is for you to begin verbalizing personal information. Not just thoughts and reactions, but some of these internal experiences.
M: I don't know that I want to do that.
D: Just tiny bits of it, here and there.
M: I'll keep that in mind.
She waits...I'm silent. She tries again.
D: To clarify: you're not telling them anything?
M: No.
D: I would just repeat: throwing yourself into a high-stress environment...you've tried that. We know that doesn't work. If you tell them some things...right? They can make a few adjustments. Maybe turn the music down. Maybe not drag you off to a different house.
I look around and start to fidget. I'm getting frustrated. She puts the hands back up.
D: A little disclosure.
M: I want to learn to manage my reactions to things. I feel like it's on me to deal with this stuff.
D: Yes, but it's okay to broaden your definition of "dealing". That's what we've been working on. Be more open. Disclose some things. And if people respond, help out a little, it will be much easier to manage your reactions.
M: I am being more open. When we talk about books and movies and stuff, I'm sharing my thoughts on things. So, that's me. That's sharing.
D: Which is great. I don't want to minimize that. What I hear is that you're moving away from the mirrored communication...you're not just responding with variations on what the other person is saying. That was a big part of the marionette, just staying walled off in these artificial personas. So...you're getting out, you're making changes. This has all been extraordinarily difficult. But...talking a little more about the sensory issues...you've got to include that.
M: I don't, actually.
D: Why not?
M: Because that is private. Period. It's for me to deal with.
D: But if these people are friends...
M: ...if they're "friends"...and let's just very clear on this point. Let's focus on that word. If they are "friends", Doctor, then they are not fucking babysitters. I want to be...and I will be...on an equal footing when I interact with people. I refuse to go out with a mindset of "Hey, let's attend to me. Let's turn the lights down. And the music. Oh, and cell phones off please."
D: It doesn't have to be that extreme. And you know that.
M: I think the issue here is the way we're defining "disclosure". You're wanting me to disclose my problems. I'd rather disclose my personality.
D: I don't think it's possible to separate those two. And I'm uncomfortable with the word "problems".
M: You want a smiley-face rhetoric? Have we met?
D: My point is that the sensory issues...those are part of who you are. You shouldn't have to hide that.
I'm upset for awhile, crying a bit, angry.
M: I hear what you're saying. I'm just struggling with finding that balance. A lot of this stuff...you know, the way I am, it just pisses me off. I don't know how to...ugh. I don't even know.
D: What I want is for you to have good experiences with people. Your goal is to make friends. Your pattern is that when you're around people, you get uncomfortable and shut down. You never discuss yourself...so that's what we're needing to change. And if you make small requests...or just disclose a little about yourself...they can make some tiny adjustments. They can make the environment just a little more comfortable. If you're more comfortable, you're less likely to shut down...withdraw. You're more likely to stay engaged...to feel less lonely. Is it that wrong to mention a few of the sensory issues?
M: I don't know. I'm not sure anymore. It feels wrong. It feels private, Doctor. Why would I want them to know about a part of myself that I hate?
D: Let me throw out a metaphor and then I'll move on, okay?
M: Okay.
D: Guy has diabetes. He makes a new friend, goes to their house. The friend gives him a plate...a fork...and a slice of cake. So...should he eat the cake? Make himself sick just because the cake was offered? Or should he just say, "Sorry, I have diabetes".
I don't say anything.
D: If he discloses the diabetes, the friend can offer him something else. The friend can adjust to the new information. If he refuses to disclose the diabetes, the interaction gets really uncomfortable really fast. He gets sick. Not disclosing...it doesn't help that guy.
M: But people know what diabetes is. If you say that word, "diabetes", people can adapt accordingly without a lot of discussion.
D: You don't want to talk about Asperger's.
M: No. Even if they're familiar with it, I would have to specify the way it effects me. I don't think the frame of reference is in place to make "a little disclosure" possible. And I don't want to go into very much detail.
D: And that is completely understandable. Your strongest impulse, M, is to hide these things away. For most of your life now, that has been survival skill #1. No diagnosis...no way of understanding your reactions to the world...all of that confusion...so quite understandably, you put that wall up. It's a powerful coping mechanism. Now, though, it's a barrier. The new skills that will help...they go against all of your instincts. You need to start opening up...but it's not necessarily going to feel good at first. It will seem odd. It's going to feel weird and make you angry. That is natural. Normal. You should be angry right now.
M: Thank you for saying that.
I pause...I think and think.
M: I'm not sure what I'll say, not say...I'm having trouble establishing where that line is. It's been confusing.
D: Well, do me a favor. Stay confused about that. Any time you say, "I'm uncertain", to me that just means your options are staying open. I like that. When you are absolutely certain about something? That's when I know the door is closed. So yeah. Stay confused.
M: I'll work on it.
D: Did you have any fun?
M: Umm...I'm conflicted. On a personal level, I like them. We seem to get along really well. But no, I did not have fun. It felt like a chore.
D: Where's the depression at?
M: The good thing is that they're into low-lighting as well. Even at their friends house, things were dark.
D: Are you depressed?
M: I don't know.
D: I would expect you to be. I know how hurt you can feel when you're around other people. And socializing more: that's going to mean...
She presses two fists together.
D: ...coming up against some of this.
She pauses. I don't say anything.
M: It seems more...productive...to avoid the topic.
M: Got it. Gold star moment. Hooray.
D: What happens next? Are you going to see them again?
M: I don't know what to do.
The next week, I go to the pub, see the couple. We talk. They invite me over.
I go. It's not fun, it's stressful. The fact that a basic social interaction is stressful...it makes me angry. I go back the next week, and then on a regular basis after that. Slowly, I start mentioning some things. I never reference Asperger's, but I do describe some "sensory issues". Specifically, I tell them "my brain is a little screwed up. I integrate sensory data in a disorganized way. It sucks." Not exactly what The Doctor had in mind...but certainly more than I had in mind.
They make some adjustments. Things improve. As they improve, I'm able to just relax, have more fun. And that's basically how the unthinkable happened: somehow I make and sustain a friendship after a decade of isolating. It's weird to me. And it's nice.
