Journeys with Autism

Yes, the title of this post is a very apt metaphor for my life at present, but my intention is to write about how to literally navigate when you literally do not have a sense of direction.

My ASL class begins next week, so I decided to walk the route to and from the school. I have learned the hard way that if I want to arrive at any new place on time, I must do a trial run and make sure that I know the route. So, before I made my way to the school for the first time, I looked up the route online. Since I can’t read a map very well at all, I simply printed out the written directions:

1:  Start out going SOUTH on JUNIPER ST toward ALDER ST.

2:  Turn RIGHT onto ALDER ST.

3:  Turn LEFT onto CATALPA ST.

4:  Turn RIGHT onto HOLLY ST.

5:  Turn SLIGHT RIGHT onto WILLOW ST.

6:  Turn RIGHT onto QUINCE ST.

7:  Turn LEFT onto REDWOOD ST.

8:  Turn RIGHT onto HAZEL ST.

9:  Turn LEFT onto LILAC DR.

10:  100 LILAC DR is on the LEFT.

Yesterday, I set off for the 2 ½ mile round trip. Because my directions were clearly printed, I had no trouble finding the school at all, and I was delighted by what I saw: children playing soccer, a beautiful, green campus, and plenty of parking. I was able to locate the building in which I’d have to check in, but I decided that I didn’t want to venture too much further onto the campus. I wondered whether someone might ask me whether I needed help, and I was anxious that I wouldn’t know how to respond. I don’t know sign language yet, and since I was wearing my headset, I wouldn’t be able to speak to anyone, either.

All the same,  I was quite pleased to have found the campus without difficulty, so I turned around and headed for home. The key words here are turned around. Turn me in a direction different from the one in which I’ve started, and I’m lost. (And yes, I mean that literally as well as figuratively.) Unfortunately, I hadn’t printed out the directions in reverse, so I was left trying to figure out how to reverse them in real time. I always have a problem with this task, but most of the time, I deny that it’s an issue at all. This time, the denial resulted in my getting lost less than a mile from my house. I needed to stop and think very hard, several different times, about how to read my instructions backward so as to find my way home.

Since I cannot create a mental picture of any route I’ve ever taken, all I could do was to work with the printed text. By the time I was close to my house, I’d finally figured it out. I realized that all I had to do was to start from the bottom, reverse each direction (changing Left to Right and Right to Left), and apply it to the street name in the step above it. Here’s how it looks for the first two turns in a homeward direction (reading from the bottom up):

7:  Turn LEFT onto REDWOOD ST.

                 LEFT
8:  Turn RIGHT onto HAZEL ST REDWOOD ST.

                RIGHT
9:  Turn LEFT onto LILAC DR  HAZEL ST.

I was am kind of exceedingly proud of myself over this bit of magic.  I deeply envy admire those who can hold the image of a route in their minds, but for someone as directionally challenged as I am, another strategy is a necessity. Happening upon the logic of how to reverse course was an incredible relief.

© 2009 by Rachel Cohen-Rottenberg

I’ve signed up to take an introductory course in American Sign Language. The class begins in early September.

Initially, I had two reasons for signing up. First, because I hope to volunteer at a school for the deaf, I want to learn the local language. Second, when I’m out in public wearing my headset and people want to interact with me, I want to have some way to communicate that I can’t hear or speak. At the thrift store, I now wear a tag on my shirt that says, “I have a hearing disorder. Please ask a staff person for assistance.” It works just fine, but I can’t possibly make enough tags to cover every situation in which I might find myself. I have to be able to communicate in some recognizable way. Of course, if I sign, most people won’t know the particulars of what I’m saying, but they will recognize ASL when they see it and draw the appropriate conclusion. In addition, I’ll feel that I’m communicating, just as if I were speaking French or Hebrew. I won’t feel so anti-social, so cut off, so frustrated about how to let people know that there’s a human being in here. 

When I got the registration materials in the mail, another reason for taking the class nearly jumped off the page at me: each two-and-a-half-hour session is carried out entirely in ASL. No voices. Just signing. Full, silent immersion, once a week. Can you imagine? A room full of quiet, hearing people? I know you can find them at silent meditation retreats, but I don’t meditate and besides, I want to communicate with other people. I just don’t want to have to speak all the time.

For much of my life, I was a stereotypical, talkative Aspie. I could talk anyone under the table. Anyone. Of course, I completely exhausted myself and everyone else, but the point is that, once upon a time, it was possible. My husband would probably tell you that it’s still possible, because as he said the other night, “There are always a lot of words flying around in this house.” And it’s true: I can talk his ear off. But these days, he’s really the only one with whom I ramble on, and to tell you the truth, I’m starting to wear myself out.

As I look back, I understand so much about my formerly talkative self. Although I didn’t know it at the time, talking a blue streak was my favorite way of fending off the prospect of auditory overload. If I could talk at someone, they never got a chance to overwhelm me. If the person were just as talkative as I was, it didn’t matter. It was like upping the ante at a poker game. I could get out in front and stay there. Of course, I was tiring myself out, but at least I was in control of the situation.

Well, sort of.

Another great thing about this strategy was that I didn’t have to face the fact that I couldn’t initiate a typical conversation. I didn’t have to confront my ignorance about where to jump in, when to step back, and how to stay in the flow. I didn’t have to face my awkwardness or my shyness. I didn’t have to register the fact that I couldn’t process another person’s speech as rapidly as I thought I could. I’d just go on a rant or a ramble with my favorite topic and talk myself into oblivion.

And now, it seems, I’ve used up the greater part of my lifetime quota of speech. It feels a little weird, but that’s life. Some days, I’m comfortable having conversations with other people, and some days, I’d just as soon not try to summon the energy.

So much for speaking. But then, there’s listening. There’s being out in the wide world, with all kinds of conversations going on around me, and not being able to attend to one at the exclusion of another. I hear everything, loud and clear. And of course, because I hear everything, I try to follow everything. My brain says, “Oh, these people are talking. I must process what they’re saying.” It’s completely involuntary. When people are talking about something interesting, sometimes it’s worth the effort (until I crash and burn at the 10-minute point). But when people are talking about nothing at all, when they’re engaging in social niceties, when they’re filling up space with chitchat, when they’re saying words whose purpose I cannot possibly comprehend, then all that brain processing is a complete waste of time.

I will concede that when people seem to be “talking about nothing,” they may actually be communicating meaning by the tone of their voices, their body language, and the associations that words carry between friends. But since I don’t see any of those nuances, I just process a whole lot of (apparently) meaningless words like, “Yeah, great to see you, too. Yeah, we just got back from the beach. Yeah, it sucks being back from vacation. Yeah, you look great. Yeah, good to see you, too.” And in the process, I get a little angry. Until recently, I never understood why. I thought perhaps I was a misanthrope, or angry at my parents, or a madwoman cleverly disguised as a sane human being. But now, I realize that when my brain works on chitchat, it’s working very, very hard on nothing. Working hard on nothing would make anyone a little annoyed.

Now that I’ve figured out that I don’t want to talk much in public and that I cannot leave my ears unprotected, exactly how do I navigate? Well, I know (at least theoretically) that I can put on my headset and go to the grocery store, the post office, my therapist’s office, the bank, and the pharmacy. I’ve got my “I can’t hear you” cards at the ready, and life is good. This strategy will likely work fine for errands, but for longer stays out there in the world, I’m having difficulty getting comfortable with the idea of not hearing or speaking.

For instance, last Thursday was the second day I’d worked at the thrift store with my headset on. The staff knows why I wear it, and that I have a new version with a “push to listen” button on one side. If any staff member needs to talk to me, I can push the button and listen without taking the entire headset off and hearing everything going on in the store. The staff seems fine with my adaptive measures, but I feel the pressure of social expectations weighing down on me like a force. There I am, in the linen department, focusing on my work, organizing everything to my heart’s content, and pretending that no one else is there. That feels weird. After all, I’d love to be able to act like my old, closeted self, smiling at people and offering my help, but I can’t. It’s just not possible to be in people mode and task mode at the same time. 

I don’t think that anyone else is consciously beaming social expectations in my direction or trying to control me with their sense of how I must be. I feel the social expectations coming from inside myself. I’ve internalized so many of them—that I must smile, that I must make eye contact, that I must show interest, that I must be pleasant, that I must play my part to give people a good experience of me, and on and on and on.

But I can’t do it anymore. I have to protect my ears. I have to conserve my speech. I have to be careful of how much energy I use for any given task.

I’m hoping that ASL will help me develop safe boundaries for sound and speech while I create bridges to other people. As much as I enjoy the experience of silence, I need to communicate that there is a human being in here, and that I’m not simply an anti-social creature with a funny headset.

© 2009 by Rachel Cohen-Rottenberg