Archive for Hearing

Arghh! Why Can’t I See and Hear at the Same Time?

September 25, 2009 Rachel ASL, Communication, Disabilities, Dyspraxia, Hearing, Sensory Processing Issues, Visual/Spatial Skills

I’ve been struggling in my ASL class, and Michelle’s comment about how visual input can affect auditory processing gave me some insight as to why. While my last post was about my auditory sensitivities overwhelming my visual sense, this post is about what happens when most of the stimuli are visual.

First things first, though: My ASL class, as it turns out, is not as quiet as I thought it would be. While the course syllabus says that there is no talking upon entering the classroom, people are still talking before class. When I asked the teacher for clarification, she said that she doesn’t feel she can ask people not to talk when they don’t know enough ASL to otherwise communicate. I was hoping that they could just be quiet and have the experience of how it feels to have to adapt, but alas, another of my great ideas is just…well, another of my great ideas. Anyway, with my earplugs and headset on, I can still hear people’s voices. I can’t hear words, but I can hear what sounds like undifferentiated noise, and it wears me out before the class even starts. Were I to show up right at the beginning of class, however, it wouldn’t make much of a difference. The teacher jokes around a lot, so there’s a lot of laughter, and it’s quite distracting. Most of the time, I feel exactly as I do in the rest of the world: I wonder why everyone else is making noise when I’m trying so hard to concentrate.

But the problem isn’t just sound. It’s the fact that being in a room full of people is very disorienting. Even if the room were silent for two hours, I’d have all the visuals of people moving around, using their hands, gesturing in nonverbal ways, expressing things with their faces, and thereby distracting the living hell out of me. In the class, I have to focus very hard just to communicate and respond to the simplest signs in the language—signs that I can easily use and understand when I’m watching my ASL DVD, or showing Bob or Ashlynne what I’m learning. I need more structure, more quiet, and fewer people in order to learn and to use what I’m learning.

Unfortunately, the class feels very unstructured and chaotic to me. The description says that we’re supposed to be learning Units 1 through 6 of the book we got, but we’re already three classes into a 12-week course and we’re not even all the way through Unit 1. When I asked the teacher about the homework after the second day of class, she said that she doesn’t give homework, and that we should just study the material in the book on our own. Then, when I asked whether we could use signs in class that we’ve learned from the book, she said no, because not everyone will have learned the same signs. She only wants us to use the signs that she’s taught us in the class so that we can all learn them together. 

I understand what she’s trying to accomplish, but my brain doesn’t work that way. I have to learn things outside of class in order to really understand how to do them; I can’t just pick them up from watching her once a week and remember them when I get home. There is far too much in my visual field for me to be able to discern what I’m supposed to remember. And of course, once I get back to class, I can’t remember what signs she’s taught and what signs I’ve learned from the book.

And then there’s my moderate dyspraxia. I have a lot of trouble watching, imitating, and sequencing moving visuals, and ASL is one long series of complex visuals. While it’s a beautiful language, and I love learning it, I’m also finding it very challenging. When visuals are static, I can focus on them to my heart’s content and see all kinds of patterns and colors. When visuals are moving, it’s very difficult. I can get there, but it takes time and work. I’m willing to put in the time and work, but I need a different learning environment. The present one isn’t working for me.

I finally understand why Aspie kids need IEPs and one-on-one aides. I need educational supports at 51 that just aren’t there in a regular classroom. I’ve emailed my contact at the school about finding some other way to learn and practice ASL. Perhaps someone would be willing to tutor me? I don’t know. Wish me luck!

© 2009 by Rachel Cohen-Rottenberg

4 comments

Hearing, Seeing, and the Empathic Experience

September 22, 2009 Rachel ASL, Communication, Empathy, Eye Contact, Hearing, Sensory Processing Issues, Visual/Spatial Skills

I’ve been wondering whether there is a connection between my auditory oversensitivity and my inability to see nonverbal cues. I rely on my visual sense a great deal, and I experience the visual world with great intensity, so being unable to see nonverbals that are (apparently) right in front of me is very puzzling. It’s as though some obstacle were in the way.

I have read posts by other Aspies who say that they can see a person’s nonverbal signals all at once, but that they can’t understand the signals until later. These folks can replay interactions in their minds in order to view the nonverbals individually and interpret them. I envy Aspies who have this ability. When I’m interacting with a person, I don’t see any nonverbal signals of which I’m aware, so understanding these signals later is out of the question.

In last week’s ASL class, I began to get a hint of what might be the source of the problem. I was blocking out sound almost entirely, so I could not make out any words for the entire two hours. Because people were allowed to speak in the first two classes, some of them were taking the opportunity to ask a lot of questions. I couldn’t hear the questions, but my virtual deafness allowed me to observe people without any auditory distraction. All at once, I noticed that I was watching how one of my classmates used her hands and her facial muscles when asking a question. The inclination to watch felt intuitive, but my interpretation was on a wholly conscious level. I thought, “She’s moving her hands in such a way as to appear authoritative about what she’s saying. Her face gives me the feeling that she takes the subject matter of the question very seriously.”

I have no idea whether my interpretation was correct, but based on my previous interaction with the person, it was (at the very least) a good guess.

So, I got to thinking: Have I failed to see nonverbal signals all my life because I’ve been so distracted and overwhelmed by sound? As compelling as the visual world is to me, the auditory world commands my attention. Whether I’m listening to someone use a hammer, whisper in a movie theatre, or talk in a large group, my response is always the same: I can’t help but hear it, and I can’t help but be overstimulated and overtaken by it. It’s entirely possible that I’m not interpreting the nonverbals because my ears have been using up too much of my attention. Besides, because I’m always a click or two behind in a conversation, I’m spending so much time parsing the words that I haven’t got time for the nonverbals. And once I parse the words, the nonverbals that went along with them are already gone.

It’s also possible that my visual and auditory systems function in analogous ways. Just as I can hear everything very clearly, but can’t prioritize, filter, or interpret competing sounds, so I might also be seeing all the nonverbal signals very clearly, but can’t parse, separate, or interpret what’s right in front of me. When I walk into a large, noisy social gathering, I hear very little except pure, undifferentiated sound, and I overload immediately. Perhaps each person has the same effect on me visually: all the nonverbal signals get piled on top of one another until I see nothing except undifferentiated gestures and facial expressions whose cumulative impact is quite pronounced. After all, a face-to-face conversation can be an extremely intense experience for me. Perhaps I avert my eyes because I’m actually overloading on nonverbals.

If taking in undifferentiated sound has an impact, taking in undifferentiated nonverbals must have an impact as well. With sound, the result is auditory overload; with nonverbals, it seems to be empathic overload. Although I can’t parse the nonverbals, I have a very powerful experience of almost every person with whom I come into contact. I can feel the person’s mood and emotion. It’s a wonderful ability to have in a scary situation, but it’s very distracting when I’m just trying to go grocery shopping.

Some people would call this kind of intuition a sixth sense, and perhaps it is. In any case, I seem to have exquisitely acute senses that bring me information in ways that I don’t always consciously understand.

© 2009 by Rachel Cohen-Rottenberg

8 comments

The Generosity of the Local Deaf Community

September 20, 2009 Rachel ASL, Communication, Community, Hearing, Sensory Processing Issues, Speech
I have been deeply moved by the generosity and kindness of the Deaf community in my area. Every single person I’ve contacted has been friendly and supportive. Every single person I’ve emailed has focused on my concerns and given me direct, practical answers.

When I first made contact with the local school for the Deaf, I left the following message on its website:
 
“I’m a 51-year-old woman with recently diagnosed Asperger’s Syndrome, a form of autism.
 
One challenge associated with my autism is a sensory processing disorder that causes all sound to come into my system at the same high volume. As an adaptive measure to keep myself from being housebound, I have begun wearing noise-blocking headphones and living much of my life in public as though I were deaf and not able to speak. Finding community under these circumstances is very difficult. I am thinking that ASL might give me a way to communicate with others and not be so isolated. I am wondering whether your organization or community would have any resources for people with an auditory disorder like mine. Any suggestions would be much appreciated.”
 
(When I wrote the email, I was still using the term “disorder” without much concern. I’m now attempting to banish it from my vocabulary.) The very next day, I received the following message from Karen, the school’s Director of Development and Public Relations:
 
“Hi Rachel,
 
What a creative way of handing your noise challenge!  I’d recommend you check out the DeafVermont yahoo group which posts a wide variety of local social events and news: http://groups.yahoo.com/group/DeafVermont/.  My colleague will contact you regarding our Brattleboro ASL classes. 
 
Would you also like to be put in touch with someone for work-related assistance?”
 
After thanking her for her email, I asked whether I might be able to find some volunteer opportunities at the school. I again received an immediate response:
 
“Hi Rachel,
 
Your offer of volunteering is wonderful!  Thank you.  I’m going to talk with some of my colleagues and get back to you about that.  How much time would you want to spend here and what hours?
 
In regards to ASL, even before signing up for classes you could try it out by taking an instructional video out from the Brattleboro library.  Videos are better than books because many signs rely on motion, which makes them hard to display in print.  (BTW, we have a school here for autistic, nonverbal children, not all of whom are deaf, who communicate via sign language, so you’re right that ASL can be an effective alternative communication tool.)  Just so that you know what to expect, ASL has its own grammar and rules so learning fluent ASL generally takes people several years.  However, you’ll probably feel comfortable with a basic conversation after one class…”
 
In a follow-up email, she suggested that I might enjoy volunteering at the school library or helping to work on the school’s email newsletter. I began an online conversation with her colleagues about volunteering, and then wrote to Karen about my most pressing need:
 
“I’m looking for some guidance on how to navigate the world ‘out there’ without hearing. I feel as though I am lost between two worlds: I can no longer go about my life in public as a hearing person, but I have not asked for any guidance about how to proceed from there. I’ve been coming up with my own strategies for doing simple errands, and I’ve signed up for the ASL 1 class, but I’m feeling very anxious about venturing into more unstructured situations (like browsing a book shop…). How do I communicate when I have a question or want to give information? How do I signal that I can’t hear if someone asks me a question? How do I let people know what I need or want? Right now, these questions feel very overwhelming.
 
I wonder whether someone in the Deaf community would be interested in exchanging some emails with me about how to go about these things. It would really help me to hear about strategies from someone who has more experience than I do. If you could put me in touch with someone, I would be very appreciative.”
 
In response, Karen suggested that I contact Will at Voc Rehab, a state government agency that helps disabled people in Vermont obtain job retraining and employment. She felt that he might be able to guide me. When I sent him a message, and explained that I do best by written communication, he was only too happy to set up an email appointment.
 
To begin our discussion, I sent him a list of questions. Following are my questions, together with his responses:
 
Question #1: When you are out in the world, walking through town or looking at items in a store, how do you communicate that you can’t hear if someone tries to talk with you or ask you a question? I have a lot of anxiety about this particular issue. I am afraid that I will feel so awkward that I’ll be tempted to take off my headset and talk, despite the acute impact on my system. If I have a strategy in place for how to respond, I will make a much better choice.
 
Answer #1: I recommend that you carry a pen and some paper with you.  That way, you can write notes with people if you are unable to decode what they’re saying to you verbally.  I have a blackberry with a feature that allows me to type notes to people. 
 
Question #2: How do you communicate in, say, a bookstore when you have a question or want to give information to someone?
 
Answer #2: I write back and forth with store reps.
 
Question #3: How do you do a task requiring a lot of back and forth communication, such as opening a bank account, without hearing or speaking?
 
Answer #3: I write back and forth when I’m in a bank.  However, so many services are available online now that I can do bank business, shopping, insurance adjustments, etc. online.  If you prefer to go to the bank or another place in person, writing notes might be ideal.  However, you would need to ask the person to look at you directly and speak slowly if you guys communicate verbally.  It also helps to do business in an area where the lighting is decent and there is less background noise.
 
Question #4: Do you have any suggestions for a short answer I can give when a person asks whether I am deaf or hard of hearing? I am neither, in the usual sense. In fact, I am all the way on the other side of the bell curve: my hearing is so acute that my experience of sound is aversive, and I have to block it out. Once I’ve blocked it, though, I am very hard of hearing. You see the problem.
 
Answer #4: You could say something like “I cannot hear well” or “hearing is hard for me.”
 
Question #5: I don’t much like using the term “disorder” to describe myself, any more than Deaf people like the term “hearing impaired,” and yet, “auditory processing disorder” is the only term that seems to make sense to others. If you have any suggestions for more positive terms, I’d be happy to entertain them!
 
Answer #5: I’m not sure if it’s imperative that people with hearing loss label themselves as deaf, hard-of-hearing, late-deafened, etc.  Everybody’s a bit different and has their own traits/needs. You could always describe yourself in a way that you want people to view you (emphasize good personal qualities). If you’re looking for specific words to use instead of auditory processing disorder, I’d suggest saying something like “I have hearing loss” or “I have a hard time hearing.” Even though you don’t actually have loss inside your ears, you still have hearing loss beyond your ears.  

Yes! I have hearing loss beyond my ears. Of all the suggestions he gave, I liked “Hearing is hard for me” the best. It’s absolutely true, and it’s very concise. So, later in the afternoon, I updated all of my “I can’t hear you” cards, removing the term “hearing disorder” entirely. The updated cards look like this one:

Hello—

I am wearing these ear protectors because hearing is hard for me.

My shareholder number is 1234.

I will bag my groceries
myself.

I will use my debit card with no cash back.

Thank you!

 
 
 

 

 

 

 


When I went to my second ASL class on Thursday night, I wore my most effective Peltor headset with a pair of earplugs. The combination allowed me to block out all sound almost entirely. I could only hear the interpreter’s voice on a very low frequency, as though she were quite far away, and the laughter of my classmates when the teacher made a joke. (The teacher, by the way, has an excellent sense of humor, and sometimes it seems that we are laughing as often as we are signing!)

At first, it felt strange to hear virtually nothing, and I got a little sad about it. But then I thought, “This is the reality of my life. I can either be paralyzed by it, or accept it and adapt to it.” Because I protected my ears so well and did not use my voice, my experience of the second class was much better than my experience of the first one. I began to understand why some autistic people just stop talking altogether. It was a tremendous relief to be able to focus on my greatest strength—my visual sense—and to leave listening and verbal communication outside the door. I like to speak and to listen to my family and friends, because they know me and they are willing to slow down their words for me. But out in the world, I am much better off keeping speaking and listening to a minimum.

The people I’ve contacted in the Deaf community understand that I have difficulties with my hearing, and they’re taking it seriously. I have to do the same. Although being in a room with fifteen other people is tiring, I’m determined to keep going. Fortunately, ASL is so interesting to me that I can’t wait to learn more!

© 2009 by Rachel Cohen-Rottenberg

5 comments

My First ASL Class: I Live to Tell the Tale

September 11, 2009 Rachel ASL, Communication, Community, Hearing, Sensory Processing Issues, Speech

Last night, I went to my first ASL class. I’m not sure how to summarize my feelings about it except to report what I said to my husband when I got home: “That class was the most terrifying experience of my life!”

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

7 comments

On Word Pictures, Intelligence, and Going Slowly

September 9, 2009 Rachel Communication, Hearing, Modes of Thought, Sensory Processing Issues, Speech, Word Pictures

I’ve arrived at a major breakthrough regarding my ability to process speech.

For the past week or so, I’ve been noticing that even Bob has been speaking too quickly for me. He speaks very calmly and very straightforwardly, but I’ve been feeling the strain of trying to keep up with him. I mentioned it to him a few days ago, and he’s begun slowing down his verbal speed. The other night at dinner, we were talking at a much slower pace than usual, and I noticed something extraordinary: The only way for me to grasp his meaning was to concentrate on the word pictures that were appearing in my mind. Only by taking the time to focus on the word pictures was I able to get a clear and substantial understanding of what Bob was trying to say. 

And what’s more: Having the time to concentrate on the word pictures gave me time to respond in a meaningful way. I didn’t go on endlessly and tire myself out. I didn’t stumble over my words, transpose letters, or try to speak at break-neck speed, anxious all the while that I’d forget what I was going to say. I just responded, in the moment, in a purposeful way.

It’s a minor miracle, really.

I finally get it: My understanding of speech is visual, not auditory. It begins with word pictures, not with sound. My natural way of being in the world is to start with the spelled-out words that form in my head. Perhaps it’s for this reason that I don’t remember learning to read. I’ve always known how to read. At some point, I must have intuitively figured out the relationship between the spoken and the printed word. I’ve heard about children with Asperger’s who can read at a very high level at a very young age. I wonder whether they, too, can see all the words spelled out in their minds.

I’m beginning to understand why I have trouble keeping up with a conversation, even with just one other person. If there are too many words coming at me too quickly, I can’t take the time I need to see them in my mind. The word pictures are still there in my head, but they’re going by so quickly that I can’t keep up. If you put me in a room with more than one other person, the problem increases exponentially. And if you bring me to an unstructured social event, in which people are talking, drinking, eating, laughing, and moving around, I still see the word pictures in my head whenever my ears pick up a particular group of words, but the word groups are going in several different directions at once, and I’m still trying to follow all of them. No wonder my brain feels like it’s melting the minute I enter the room.

So here’s what I need from my friends and family members: I need them to slow down the pace of their speech, and I need them to leave pauses in which I can form a response. I know that some of my friends will be able to adapt to my style of conversation, and I know that others won’t be able to do it. For some people, it will be fairly simple. For others, it will be physically impossible. So be it.

I’ve seen this day coming for a long time. From the time I was young, I’ve felt that I must keep up, that I must go faster, but as the world kept speeding up, I found myself falling further and further behind. As a child, I remember trying to explain something to my mother, only to have her roll her eyes and say, “Just come out with it, for goodness sake!” So I learned to talk very fast, hoping like hell that somewhere in all that verbiage, someone might understand what I was trying to say. But all the while, I’ve wanted so much to slow everything down.

Why didn’t I? I’ll tell you why, even though it’s my deepest and darkest secret. I’ve believed all my life that if I have to slow things down—if a slow pace is the only one that works for me—then I must not be very smart. Now, I know that for many people, being less than very smart would not be the cataclysm it is for me. For me, it’s in the realm of the unthinkable. The belief that I’m very smart has driven all my hopes and all my dreams for my entire life. It’s what’s fueled whatever self-esteem I’ve built. It’s been the bedrock of my self-worth. It’s kept me going when I didn’t think I had anything left.

And now, I have to say to my friends and loved ones, “Please speak slowly so that I can enjoy a conversation with you.” In so doing, I’ve come face to face with my greatest fear: If I have to go slowly, I must be stupid. As I look that fear in the face, I see it transformed. It’s no longer my greatest fear. It’s simply the greatest myth I’ve ever mistaken for the honest truth.

Going slowly has nothing to do with intelligence. Nothing at all. Speech just takes the scenic route through my brain. That’s it. The whole reason that I go so slowly with speech is also the reason I’ve always been able to read. I see words spelled out in my head. My brain translates sounds to visuals, and then it has to translate a response into speech. What’s that got to do with being smart? It has nothing to do with being smart. It has everything to do with being different.

My husband told me that when his late wife was dying, she began to lose her ability to speak. As a result, she had to become very disciplined about not wasting any words. She had to speak more slowly, and the people in her life responded by slowing down their own speech. I’ve always thought their arrangement was possible because it was temporary. People slowed down their speech because those conversations were the last ones they would ever have with her. 

But I don’t have a terminal condition. I’m autistic. I need people to slow down their speech for me, and I will need them to do it for the rest of my life. How many people can do it? I don’t know. Time will tell.

© 2009 by Rachel Cohen-Rottenberg

14 comments

Autism and Me: Difficulties with the Spoken Word

September 6, 2009 Rachel ASL, Communication, Hearing, Sensory Processing Issues, Speech, Word Pictures

I’ve mentioned in other posts that I see words spelled out in my mind when I’m thinking, talking, or listening. The Asperger’s specialist who diagnosed me said that seeing these word pictures must be very distracting to me. I had never considered the question before. I now believe that this way of thinking is part of the reason that I have a hard time keeping track of a lecture or conversation. I’m seeing the visuals while trying to listen.

College Lectures
In college, I learned that if I weren’t taking notes, I wouldn’t be able to concentrate on an hour-long lecture. Without a pencil and a piece of paper, I’d follow the lecture to a certain point, and then suddenly, it would seem as though the lecturer had taken a huge logical leap. For the life of me, I could not figure out how he or she had gotten there. I’d go back in my mind, trying to parse the beginning of the lecture, and before I knew it, we were in the middle. By the time the lecture was over, I had long since given up.

My sense is that I became so interested in the literal appearance of the words in my mind that I lost track of what the lecturer was about to say next. After a great deal of frustration, I learned that the best way around the difficulty was to take furious, copious notes. It was the only way I could remain present to what was being said. Later on, I could read my notes and put the logic together myself.

Conversations with Others
Every Friday morning, I used to volunteer at our local public library. Everyone was very friendly, the place was very quiet, and my job involved packing up books for interlibrary loans. One morning last winter, when I was still grappling with the issue of whether I was autistic, I had an opportunity to observe what happens to me when I don’t have recourse to the written word.

The first ten minutes after my arrival at the library were fine. I made eye contact, I smiled, and I was able to stay in the flow of the conversation. One woman complimented me on my scarf and asked whether I had knitted it myself. When I answered in the affirmative, another person said that I should talk with the lady on the second floor who was organizing a knitting circle. One of my co-workers took me up to meet her, where I gave her my contact information.

As I came down the stairs, I congratulated myself on my social skills, and I wondered why in the world I thought I was autistic. I took up my post, packaged the books, and talked to people on the staff when I needed help.

By the time I left two hours later, I was completely disoriented and overwhelmed. I felt out of sync in every conversation. It was as though each interaction were a dance to which I had never learned the steps. With every word coming out of my mouth, I knew that I was going on far too long and talking about all the wrong things, but my panic over feeling overwhelmed only made me talk more.

To make matters worse, I couldn’t remember anything that anyone had told me. Was the spinning class up the road or was that the knitting class? And there was something about a drop spindle in there, wasn’t there? I felt as though I were behind a glass, listening to people speak, but unable to remember the content of their words or come up with an appropriate response.

At that point, I was finally convinced that I have a problem processing spoken language. I couldn’t keep up with all the words coming into my brain, and I couldn’t figure out how to slow down the words coming out my mouth. Besides, if I just kept talking, surely someday, someone would understand what I was trying to say.

Learning New Languages
I love foreign languages and have studied French, Spanish, Latin, and Hebrew. I can read and write a foreign language fairly easily, but when it comes to speaking, I have difficulty arriving at fluency. I have a very hard time understanding a foreign language when it’s spoken, and I find it difficult to answer spoken questions in any kind of reasonable time frame. Until I was diagnosed with autism, I could never understand why. Now that I realize that I can’t converse very fluently in English, my difficulties with foreign languages are no longer a surprise to me.

As I get ready for my ASL class, I’m heartened by the knowledge that ASL is a visual language. Lou Fant, one of the founders of the National Theater for the Deaf, wrote the following about ASL: “The uniqueness of ASL lies in the simple fact that it is based upon light waves rather than sound waves.” I’m an intensely visual person. I can focus, attend to, and organize what my eyes can see far better than I can focus, attend to, and organize what my ears can hear. ASL may very well be the language in which I finally arrive at fluency.

© 2009 by Rachel Cohen-Rottenberg

11 comments

Speaking, Listening, and Social Expectations

August 22, 2009 Rachel ASL, Communication, Disabilities, Hearing, Sensory Processing Issues, Speech, Volunteer Work

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

9 comments

Deafness and My Experience of Autism

August 12, 2009 Rachel Belonging, Communication, Community, Disabilities, Hearing, Marriage, Sensory Processing Issues, Speech, Word Pictures

First things first: I am neither deaf nor hard-of-hearing, although hearing is very hard for me. Sometimes, I wish I were deaf, but my condition often seems to be the very opposite of deafness. As I’ve said before, I hear everything at the same volume and cannot filter or prioritize sound at all. For awhile, just to get away from unforeseen auditory assaults on my system, I spent most of my time indoors.

Now, however, I am in the phase of Desperate Times Call for Adaptive (and Creative) Measures. So far, this week has been an interesting series of adventures in the land of autism, auditory processing, and the world of other people.

Sunday
My husband and I sat down with our Support Strategy List that I mentioned in my post on creating a support network. The purpose of the list is to develop a network of people I can call on to do essential tasks if Bob is ill or if he passes from this life before me. Without such a network, I’m a mass of anxiety and insecurity whenever Bob travels away from home for very long.

In the course of our discussion, we modified the list. It now has the following form:

Resolved issues:
Housecleaning (We’ve hired someone to clean the house once a week.)
Understanding home and non-profit financials. (Rachel is up to speed on this subject.)
New activity to try:
Rachel will try shopping at the co-op for herself and Ashlynne.
Remaining issues:
1. Driving Ashlynne where she needs to go until her 17th birthday (when she can drive herself). Bob will talk to the parents of one of Ashlynne’s friends to set up logistics.
2. Cooking meals.
3. Picking up prescriptions at the pharmacy.
4. Bringing envelopes or parcels to the post office.
5. Accompanying Rachel to doctor appointments or hospital procedures.
6. Getting respite assistance for #1-5 when Bob is ill.
7. Making telephone calls (to the insurance company, doctor’s office, gas company, cable company, etc.).
8. Asking a friend to have power of attorney and seeing a lawyer for the proper documents.
9. Moving bank accounts from our old town to our new town.
10. Applying for disability (?)

Our updated list is very straightforward, but on Sunday, the road to it was full of twists, turns, and potholes. Basically, I found it very difficult to choose just one task from the list and strategize on it. The more I tried to do so, the more overwhelmed I felt. After awhile, I started saying really supportive things to Bob like, “You just don’t get it!” to which he responded with equally helpful (and completely understandable) statements like, “Why are you treating me like I’m screwing up?”

After many tears, I realized that I was scared. Really, really scared. Half of my brain looked at the list and said, “No problem. These tasks are easy, and they fit on a single sheet of paper, too!”  The other half of my brain was freaking out in the worst way. I don’t like depending on other people to do things for me. It’s not just that my ego is attached to my independence. It’s also that I like routine and fear change. So, the part of my brain that was freaking out was thinking, “What if we get everything set up, and then one day, the person who helps me make phone calls moves to Tahiti, or breaks her leg, or goes to graduate school? Then, I’ll have to make phone calls (gah!) to find another stranger (gah!) to help me make phone calls (gah!), because I find it hard to make phone calls (gah!). “

You see the labyrinth in which I often get lost.

While the strategy list is helping us to create a support network, I am finding myself drawn to the tasks that I most deeply want to do on my own. And although the list has only one new activity for me to try, I later decided on two tasks that I could attempt this week: going to the bank to open an account, and going to the co-op to do a little food shopping.

Monday
In the morning, I made the five-minute walk to our local bank. Fortunately, our bank is set up in a very organized way. In most banks, when you’re looking to open an account, you have to stand around and wait to pounce on the next available account representative. I find that approach stressful. At our local bank, thank goodness, there is a very lovely woman whose only job is to find out why you have come to the bank and how she can help you. So, I told her why I was there, and she immediately brought me over to the desk of another very lovely woman, who helped me set up the account.

I had worn my beloved Peltor Optime 101 noise reduction headset when I was walking, but of course, I had to take it off in order to converse about the account. Fortunately, the bank was fairly quiet. Even more fortunately, my account representative did not feel it imperative to fill up every available silence with annoying chit-chat about the weather or her mother’s hernia operation. She stayed focused. I was pleased. All was going well.

And then, suddenly, I realized that I’d lost track of the conversation. It happens Every Single Time. Though I didn’t look at a clock, I am relatively certain that my ability to process incoming speech ended about 10 minutes after my arrival. That’s my usual window. After that, I start getting lost. It goes like this: I’m following along, doing just fine, following along some more, and then, the words being spoken just disappear into thin air, and my brain feels as though it’s in zero gravity. I try to follow the word pictures that get spelled out in my mind while the person is speaking, but I can never keep up. When I start falling behind, I hang onto some “keyword” that I can see in my head and completely miss what the person is continuing to say about it. In this case, the woman was talking about how all the accounts at the bank will soon be online and accessible from my home computer. I saw the word “computer” in my mind, and after that, the woman might as well have said, “I think your haircut is dorky,” because I could never have parsed the sentence.

Despite the usual setbacks, it was a successful trip, and on the way home, I was able to reflect on what had happened. I realized something significant: for all intents and purposes, I am like a deaf person who cannot speak. That is, I am limited in my ability to hear speech in such a way as to understand everything that people are saying, and I often cannot come up with the words with which to make a meaningful response. It’s ironic that the word “mindblindness” gets tossed around to describe autism when my experience feels much more akin to being deaf than blind. While I can’t see nonverbal cues, I can visualize perfectly well what might be going through the mind of another person; in fact, from time to time, this question becomes one of my Aspie obsessions special interests. But unless I am in a highly structured situation (like my therapist’s office) or in a very familiar environment (like my own home), I can’t process speech very well at all or speak in a truly purposeful manner to what is being said to me.

This major realization led me to the adaptive measures that I put into effect on Tuesday.

Tuesday
I went to the co-op as though I were deaf and could not speak. I wore my noise-reduction headset and left it on for the entire duration of the trip.

Up to that point, I had been making exceptions. At the thrift store, for instance, when I couldn’t hear someone, I’d take off the headset. It worked well, but I know that it’s a risk to go without ear protection, even for a minute or two. In that short space of time, I might hear a siren, or loud music, or people shouting, and then my nervous system is like a wire that won’t stop vibrating for several hours. So, I made up my mind that for my co-op trip, there would be no exceptions.

If this experiment were to work, I had to prepare. So, the night before, I typed up a card that said:

Hello—

I am wearing these ear protectors because I have a hearing disorder.
My shareholder number is 1234.
I will bag my groceries myself.
I will use my debit card with no cash back.

Thank you!

While I was at it, I typed up analogous cards for depositing a check at the bank, checking in at the clinic to see my therapist, mailing an envelope or parcel at the post office, and picking up my prescriptions at the pharmacy. If the experiment at the co-op worked, I might be able to have some success at other places in town.

The next day, before I left for the store, I emptied out the backpack I usually use when I’m outside my house and replaced it with a small bag containing my wallet and the card I’d written out. Then, I tossed a tote bag into my now-empty backpack to use for hauling the groceries home. I wrote up a grocery list for Ash and me, put on my headset, and set out on my great adventure.

When I got to the co-op, I started in the produce section, and then walked around the store, finding most of the things on my list. A few times, some people were talking loudly, and I could hear them, but not to the point of feeling jangled by it. My only anxiety was that I’d meet up with someone I knew and feel pressured to hear and to speak. Fortunately, that didn’t happen. After I’d filled up my basket, I walked over to a place near the checkout line and got out my explanatory “I can’t hear you” card, along with my debit card. Then, I picked an empty checkout line and threw myself at the mercy of fate.

The cashier I’d chosen smiled and said hello (I imagine), so I immediately put my “I can’t hear you” card on the conveyer belt and pointed to it. She nodded, read it, and then looked up and beamed a smile at me that was nearly blinding! I couldn’t believe it. At one point, as I was putting the groceries in my bags, someone came over to help, and the cashier waved the person away on my behalf. The only glitch was that I’d forgotten to put the PLU number on the tofu bag, so the cashier didn’t know which type of tofu she should charge me for. This led to her attempting to ask me how much it cost by showing me different numbers of fingers and mouthing the words. I had no idea how much it cost, but I just accepted her choice and moved on. I finally got everything paid for, put my groceries in the bags, waved goodbye, and walked home feeling about as jazzed as I’ve felt for a very, very long time.

When I got home, I was so excited that I forgot about the “coming home” part of the deal: whenever I go out into the world, I must get under my weighted blankets upon arriving home, even if I don’t see the need. I had remembered it after the trip to the bank, but after the co-op, I was practically flying around the kitchen, telling Bob all about the trip, putting the perishables into the refrigerator, and showing him what I’d bought when he said, “Aren’t you supposed to be under a couple of weighted blankets right now?”

What would I do without that man? I’d have to wear post-it notes right over my eyes.

Later that day, I sent an email to a school for the deaf in my area, explaining my situation and asking whether they might have any community support services for someone like me. This morning, I got two emails. In one, the person asked whether I wanted to sign up for a class in American Sign Language. In the other, the person congratulated me on my creative strategy for dealing with noise, directed me to a Yahoo group called DeafVermont, and asked whether I wanted to be put in touch with someone for work-related assistance. Wow! I don’t know what will come of these contacts, but it’s pretty nice to have someone write back and offer to help.

I could get used to it.

© 2009 by Rachel Cohen-Rottenberg

7 comments

Thinking in Word Pictures

July 13, 2009 Rachel Childhood, Communication, Hearing, Modes of Thought, Word Pictures

According to my mother, I didn’t speak a single word until I was 2 1/2 years old. Then, when I started speaking, I spoke in full and complete sentences.

Because I was a first child, I might very well have saved up my words until I could put a sentence together and converse properly with the adults. It’s also possible that I took to print more naturally than to speech, and so simply didn’t bother to speak for a while. I’ve always intuitively understood the purpose of the written word, and I don’t remember a time when I didn’t know how to read.

Ironically, when I entered the first grade, I was completely confused by the Dick and Jane books. We worked on them every day, and the teacher spent each session explaining, in excruciating detail, how to sound out every word. I couldn’t imagine why she had to explain anything so simple in such a tedious way. I secretly thought to myself how lucky I was to know how to read, because if I had to learn it in school, I’d be lost.

One day, the teacher asked me to read aloud a page of the book. In the picture above the text, the father was juggling. So, although I could see quite clearly that the words said “See Father play,” I read the text aloud as “See Father juggle.” The teacher told me to sound out the words and to stop guessing, but I wasn’t guessing. “Juggle” was the word I saw spelled out in my head, and it was the right word for the picture. The word in my mind was more real to me than the word on the page.

I have since discovered that whenever I think, speak, or listen to another person talk, I see word pictures. That is, I see every word spelled out across my mental screen. Needless to say, I have never had a problem with spelling. Once I see a word, I can remember it quite easily. What’s more, when taking college exams, I could leaf through my notes in my mind until I found the page with the correct answer.

The written word has always been my natural medium.

© 2009 by Rachel Cohen-Rottenberg

10 comments

Therapeutic Listening: It’s Not Just About Sound

May 3, 2009 Rachel Dyspraxia, Hearing, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Listening, Vestibular System, Visual/Spatial Skills

Last week, my OT gave me some written information explaining how neuro-typical people process sound and why Therapeutic Listening might be helpful to people with sensory processing issues. One of the articles, A Brief Introduction to Therapeutic Listening, Vital Links 2006, was especially helpful. I’ll do my best to summarize the information from that article and to share my responses. 

Listening: It’s Not Easy
Reading about how neuro-typical people take in and interpret sound gave me a profound sense of the difficulties that Aspies have with auditory stimuli.

Both consciously and unconsciously, human beings constantly monitor the auditory environment. It’s a basic survival skill. For a neuro-typical person, the process of locating and selecting which sounds merit investigation is largely unconscious. Therefore, other pathways in the brain are free to perform other functions. On a conscious level, a neuro-typical person takes the auditory information the brain has unconsciously selected, listens to it, makes choices about which sounds have priority, and interprets these sounds accordingly.

This basic neuro-typical process feels quite foreign to me. I’m not sure how much unconscious locating and selecting I do with sound. Very little, it seems. No wonder I get so tired! Some of the other pathways in my brain can’t attend to other things because my unconscious doesn’t give them a break. Almost all my processing is conscious. It feels like the only unconscious responses I give to sound are to defend against it or to become very unnerved by it.

For me, all sounds come in at a very similar volume (and thus seem to have a similar level of importance), and when I attempt to locate sound, I often look in the wrong place. For instance, this morning, two guys were on our roof fixing our chimney, and they were having a conversation. I was outside, on the other side of the house, and I could hear some of the words. For about a half hour, I was sure that the sound was coming from the apartment on my right, when it was actually coming from my house on my left!

As for consciously attending to some sounds, but not to others—under most circumstances, I can’t. I just give my attention to all of them. Sometimes, when I listen to many people talking at once, I hear a jumble of words in which I can glean different phrases, but I can’t put the meanings together. At other times, the sound of many people talking just comes into my brain as undifferentiated noise.

I can prioritize and select sounds only in very structured environments. The purpose and the organization of the group have to be clear. For example, at my karate dojo, I gave most of my attention to my sensei, since she was my teacher and kept the group focused. In well-facilitated business meetings, with clear agendas, I was able set priorities about where to put my attention. At the store where I work, I was once able to attend to one conversation rather than another, but only because the space was very big and otherwise quiet.

Even in the most structured situation, however, I find that listening and keeping up with the flow of the conversation is very hard work.

How Our Ears Work: The Cochlear and Vestibular Systems
Remember in high school, when we learned about the inner ear? I remember the cochlea, which looks like a snail shell and controls hearing. But there is more to the story. The inner ear also consists of three semicircular canals, plus the utricle and the saccule, all of which constitute the vestibular system—the system that controls movement, balance, and spatial orientation. Not surprisingly, the cochlear and vestibular systems are intimately connected. Our bodies use the same (amazingly tiny) osseous labyrinth for both systems. In fact, the cochlear and vestibular systems use the same cranial nerve for sending information to the brain, and they exchange information all along their neurological pathways.

During my sensory assessment, it became clear that in addition to my difficulties filtering auditory input, I have deficits in each facet of my vestibular system: movement, balance, and spatial orientation. I have moderate dyspraxia when performing tasks that involve balance and moving my body through space. For instance, I had a lot of difficulty learning different forms in karate. I would have to draw them out visually and then memorize the pattern. My sensei would keep urging me to just feel each form in my body, but it was very difficult. Sometimes, she would even have us do katas with our eyes closed, just to help us feel the forms inside us. Unfortunately, these exercises generally resulted in my becoming frustrated and rooted to the floor. It was either that or become completely dizzy and fall down.

As for spatial orientation…What spatial orientation? If you need directions to anywhere in the world, just send me an email. If I tell you to go left, you should go right. If I tell you to head due east (wherever that is), you should head due west. It works like a charm (except for those random, statistically insignificant moments in which I am correct).

In the final analysis, the cochlear system, which allows us to hear, is also involved with spatial orientation. Hearing allows us to become oriented to the world around us, while the vestibular system gives us information about where we are on the ground. Since both hearing and spatial orientation are basic survival skills, it should come as no surprise that those of us with auditory and vestibular deficits feel pretty anxious and disoriented. A lot.

Isn’t it a relief to know that these feelings have their origins in our neurology, rather than in some deep, dark, psychological abyss? It is for me.

How Does Therapeutic Listening Work?
Since I have problems with my auditory and vestibular systems, I was very happy to learn that Therapeutic Listening works by engaging both.

At the moment, I am listening to the “modulated” CDs. I loved the Mozart for Modulation CD, and I’m currently working with a modulated Vivaldi CD. The people who create these CDs pass the music through a filter. Sometimes the higher frequencies are allowed to come through; sometimes the lower frequencies are allowed to come through. This type of modulation exercises both the auditory and vestibular portions of the inner ear. It also works the middle ear muscles that help control our ability to attend to our auditory environment and to organize sensory data. In general, these benefits should result in better overall sensory processing and self-modulation.

At present, I’m listening to my CD for 20-30 minutes, twice a day. I’ll do so for a minimum of 10-12 weeks. Some people continue the therapy for six months or more, and others make the therapy an ongoing part of their sensory diet. I hope that the therapy is effective for me, and that I’ll be able to include it in my sensory diet. I thrive on consistency, and besides, I really love the music.

Ultimately, the purposes of Therapeutic Listening are to help me use more than one sense at a time, to reduce auditory overload, and to improve the deficits in my vestibular system. To get used to multitasking, I engage in movement while listening to the CD. Generally, while I listen, I wash dishes, fold laundry, do my artwork, or work in the garden. When I’m not listening to the CD, I do activities that engage both my auditory system (such as singing) and my vestibular system (such as rocking, walking, or bicycling).

Walking, biking, and gardening also provide joint compression and reduce stress. I’ve even noticed myself toe-walking lately. Because Therapeutic Listening is hard work for my body, it’s important to have these kind of grounding activities.

Is There a Down Side to Therapeutic Listening?
At the moment, for me, there seems to be one. I’ve been getting a lot of migraines. Fortunately, I’ve figured out why. I’m resisting using more than one sense at a time. When I’m listening to the CD and making my lunch, the combination annoys me.

Okay, it doesn’t just annoy me. It makes me irritable. Being an Aspie, I’m just not wired to multitask. Using one sense at a time allows me to focus on a project and to enjoy the process. I get so much accomplished that way. I love it. And I’m beginning to love that part of myself that keeps working, and working, and won’t let go until something beautiful comes out of it.

But I also want to be in the world. Being at home gives me much needed solitude and respite, but I lose perspective when I’m alone for too many days on end. Besides, I find people very interesting, and I like them, and I like helping them. And then, of course, I would also like to re-engage basic survival skills, like buying my food at the grocery store, without it wiping me out for the rest of the day.

To be able to do these things, I have to learn to use more than one sense at a time. So, instead of long, measured strides, I’m taking baby steps. Baby steps! At my age. With my education. And my work experience. And my talents. And all those other things I’ve used to mask my utter confusion in life.

Baby steps. Okay. I’ll try it.

© 2009 by Rachel Cohen-Rottenberg

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