Don’t get me wrong: The class was great, but so many things happened that I hadn’t planned on that I came home reeling.

The class ran from 5:00 pm to 7:00 pm, with a 10-minute break in the middle. As always, I wore my sound-blocking headset, planning to say nothing aloud and to hear very little. As requested, I got there before 5:00 pm and stood in a short line to receive my book. When I got to the front of the line, I gave the registration person a note with my name and the class I was taking. She said that she understood my situation from the emails I had sent to people associated with the school, and she asked me whether I was hard of hearing. Uh oh. What she knew about my situation seemed partial, at best. So I had to explain myself—and it wouldn’t be the last time. It was only Round One. I said that I could hear, but that sounds are overwhelming and that processing speech is difficult, especially with ambient noise. She gave me the course materials and welcomed me, and I set off to find the classroom.

The classroom was nothing as I had imagined it. I was thinking of a small room with desks. Instead, I arrived in a large room in which the chairs were all arranged in a circle—of course! How else were we to see one another? I sat down and started reading my course materials, and the room started filling up with lots of talkative people. Then, we all got a piece of paper on which to write our contact information and our reasons for taking the class. Round Two of explaining myself. I wrote that I have an auditory processing disorder and difficulties with speech, and that I wanted to find a way to communicate with people outside my family. I felt somewhat uncomfortable explaining myself again, because I couldn’t really perceive how understandable it would be to anyone, Deaf or hearing, but given that I could do it in writing (my natural medium), I still felt okay.

Then, with my headset still on, I could hear someone speaking very loudly, and it turned out to be the teacher’s interpreter. Apparently, the interpreter would be present for the first two classes. Uh oh. I hadn’t been expecting that either. Of course, just by chance, I happened to be sitting about as far from the interpreter as one could possibly get without being outside the classroom altogether. I could hear her voice, but I couldn’t make out all her words. So, there I sat, somewhat panicked, and wondering what to do. Against my better judgment, I took my headset off my ears so that I could hear her, but then the ambient noise coming through the open window got jumbled up with her speech, and I nearly started to cry. However, I realized that if I were going to stay in the room, I had keep my headset on and do something constructive to help myself. As horribly conspicuous as I felt, I had to move my seat. So I got up, walked all the way around the room, showed the teacher and interpreter the paper on which I had written down my challenges, and asked whether I could sit right next to the interpreter. The teacher was fine with it, so I walked all the way around the room again, picked up my chair, and brought it all the way back around the room to where the interpreter was sitting.

Did I mention that I felt like a completely conspicuous autistic freakazoid? I did. I hadn’t counted on that. It’s one thing to wear my headset on a walk, or in a grocery store, where I can harmlessly ignore the necessity for hearing or for speech. It’s another to wear it in a roomful of people in which I had to communicate and be seen for two hours. I felt even more “other” than usual.

However, I just registered my feelings and kept on. The teacher introduced herself, explained how the class would work, and then, horror of horrors, asked us all to introduce ourselves and share why we were taking the class. Beginning with me. Uh oh. Round Three of explaining myself. So, I took off my headset, told everyone my name, and explained why I was there. I had actually written down a summary of my challenges before coming to class, just in case I needed it, and wow, did I need it! So, I gave them as much of my summary as I could articulate without the piece of paper in front of me: “I have an auditory processing disorder. All sound comes into my brain unfiltered and unprioritized. I can’t attend to one sound to the exclusion of another. I also have difficulties with processing speech, and without my noise-blocking headset, I am overloaded by sound almost immediately. I’m here to learn a way to communicate with people outside my house.” I hugely dislike using words like “disorder” to describe myself, but it often seems like the only way to explain my challenges to the neuro-typical world, so I defaulted to that term. Of course, because I was speaking and not reading what I’d written, I had no idea whether I was being understood, or even whether I’d said anything particularly coherent, which worried me no end.

Most of the class was devoted to learning about Deaf culture, and I loved the whole discussion. There are so many issues that parallel our issues as autistic people: the determination to be seen as whole human beings, on our own terms, rather than as broken prototypes of the dominant culture; the understanding that using terms like “disordered” or “impaired” to describe ourselves gives power to the idea that we are “abnormal;” and the struggle to create community and communicate in ways that are natural to how our minds and bodies work. Of course, there are differences, and I soon found myself deep in double culture shock. I had to simultaneously navigate neuro-typical culture and Deaf culture. Where did that leave me exactly? I’m not neuro-typical and I’m not Deaf. In fact, I have acute hearing—so acute that I have to block out sound. Because I had to block out sound, I had a hard time hearing the interpreter with my headset on, even though she was right next to me, and it was impossible to hear anyone else in the class. The fact that I was going through the experience of people who cannot hear and cannot sign was not lost on me, but I felt so anxious about it that I kept moving my headset slightly away from my ears, just to hear the things that my classmates were asking. Then, I’d move it back over my ears and strain to hear the interpreter. It was very, very difficult.

Just when I thought that I couldn’t feel any more lost, the teacher asked how many people in the room were right-handed. Everyone raised their (right) hands but me. Sigh. The teacher looked at me and said, “You’re left handed?” When I nodded, she explained that I had to sign with my dominant hand, and that because she was right handed, I would have to do the opposite of what she was doing. I could have gotten completely freaked about this, but I was actually relieved, because it meant that I would simply have to mirror her.

By the end of the class, the teacher had taken to writing on the whiteboard and teaching us signs without the benefit of her interpreter. Ah, silence. What a relief! When we were all done, I had to go up to the teacher for Round Four of explaining myself. You see, she had mentioned earlier that we would be asked to come to the front of the class and sign at times, and that if that was scary for anyone, we should let her know. She also mentioned that she might need to touch our hands in order to help us form the signs properly, and that if anyone had a problem with touch, we should say something. So, I wrote out a note to her, and this time, I explained that I’m autistic, that standing in front of people is hard, that being in groups of people is hard, that I can’t tolerate light touch, and that firm touch is okay. When I gave her the note, she was very supportive. She that she would stand right next to me any time I needed to be in front of the class, and that she would not touch my hands lightly. She ended by saying “I’m really glad you’re in this class.”

Wow. I really needed the reassurance, and there it was. I nearly started to cry. Again.

Because the class had ended earlier than I’d thought it would, I needed to borrow someone’s cell phone to call Bob and have him pick me up right away. I had consciously decided against bringing my cellphone, thinking that I wanted to enjoy the luxury of being in a place in which people do not hear or speak, but there was no way around using one. The person whose cell phone I borrowed offered to give me a ride home (along with two other people), and for some strange reason, I didn’t think that being in a car with three neuro-typical strangers would be stressful. I was just thinking of how nice it was that Bob wouldn’t have to drive. Uh oh. So, I got in the car and the person driving mentioned that she was an audiologist and that she was very curious about my headset. Round Five of explaining myself, and yes, this time, I used the word “autistic.” Okay, I know, I didn’t need to give her that information, but what can you do? I’m autistic. When someone asks me about myself, they get a direct answer. Unfortunately, no one in the car was particularly talkative, so I started getting uncomfortable, wondering what they were thinking of the strange autistic lady with the headset. (I know, I know, I shouldn’t care.) We finally arrived at my street, where I told said good-bye to all of them and stumbled in my door.

I was a mess. My nervous system was so overstimulated that I was practically having an out-of-body experience, and the only thing keeping me rooted to the ground was that Bob was listening to my shpiel about how the evening had gone. By the time I was done, I had arrived at three very important conclusions:

1) I had not counted on how exhausting and overstimulating it would be to listen to the interpreter speak for two hours. I’m not sure why this possibility hadn’t entered my mind the minute I heard her talking, but I think it had to do with being in the context of a classroom. I like classrooms. I like classes. They have structure, purpose, and focus—three of my favorite things in life. I was also concentrating on the teacher, because she was the one giving the class, and I was so fascinated by the visuals of her signs and her face that I forgot that listening to someone speak would have the same impact in the class that it has on me everywhere else. I generally lose the thread of a verbal conversation at the ten-minute mark, and my senses get overloaded by groups of speaking people almost immediately. Yet, here I was, in a group of fifteen speaking people, for two hours. Of course I was spent.

2) I should never have accepted a ride home from three people I didn’t know. They were nice people, but strangers stress me out, and neuro-typical strangers stress me out even more.

3) I need to email the teacher and let her know that I have to block out as much sound as possible for the next class. I wasn’t wearing my most effective headset last night (thinking that I wouldn’t really need it), but I’m going to do it next week. I don’t see any other way to approach things and not get overloaded. I hope she’ll be supportive and that I’ll be able to follow the class without hearing anything.

So, that’s the report from this left-handed, hearing-sensitive, speech-challenged, conspicuous, exhausted autist. I’m very glad that I have you all by my side.

© 2009 by Rachel Cohen-Rottenberg

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