Journeys with Autism

As you might have gathered from my last post, I’ve been feeling a lot of internal pressure to explain myself to the outside world.

Pressure is not necessarily a bad thing, so long as it’s ultimately empowering. When I email someone at the school for the Deaf about volunteering, taking a class, or getting advice on how to navigate the hearing world, my drive to explain my sensitivities is all for the good. I’m advocating for myself. I’m making sure that people understand what I can do, what I cannot do, and what I need in order to keep myself healthy. Yes, it can be quite exhausting, and it can also make me feel very vulnerable, but that’s often the cost of self-advocacy, and I accept it.

But then there’s the pressure that doesn’t result in empowerment. This kind of pressure comes from my need to be understood for its own sake. Nothing is wrong with my need for others to understand me. It’s basic to being a human being. Why else do I write this blog, if not to be understood? Why else do autistic people read it, if not to feel comforted that someone else understands?

However, a significant problem arises when I go about my everyday life and expect that if I use enough words, everyone will understand. How is a stranger on the street going to understand the experience of being flooded by everyday sounds? How can even my husband know what that feels like? Unless they share the same experience, they can’t really know. They will always be understanding it from the outside in, rather than from the inside out. The best I can hope for is that others believe what I’m saying, that they respect what I’m saying, and that they support me.

So, I’ve been thinking a lot about my drive for self-advocacy on the one hand, and my insistence on tilting at windmills, on the other. Tilting at windmills is out of the question right now; I need every bit of energy I can get just to function well. But the drive for self-advocacy is itself taking a lot out of me, and I’ve been wondering why. What I’ve come to realize is that being autistic is essentially the experience of living in paradox, and that this experience makes self-advocacy very, very difficult for me. I’ll list (of course!) the paradoxes that have been occurring to me lately. Feel free to add ones I haven’t thought of.

1. I have acutely sensitive hearing—so acute that I have to use ear protection to get as close to being deaf as possible. So, can I hear or not? When someone asks me, I don’t have a ready answer.  What does it mean to hear, anyway? Does it just have to do with sound waves entering my brain? Or is it about whether those sound waves get filtered, prioritized, and understood? If the former, then yes, I can hear. If the latter, then no, I can’t hear.

2. I am capable of talking a blue streak, but because I am unable to follow the spoken word for very long or respond to it effectively, I find myself lapsing more and more into silence. So, can I speak or not? If speaking means being able to form words and string them together, then yes, I can speak. If speaking means being consistently able to keep up with a conversation so as to understand the meaning of the speaker and to respond in a purposeful way, then no, I can’t speak. 

3. I deeply want to be part of a community, but being autistic means that wherever I am, I am usually alone.

4. I deeply want to help people, but being around people is often impossible.

5. When I write, I know whether I’m making sense, but when I speak, I often have no idea whether I’m saying anything in a coherent manner.

6. I have difficulty sequencing tasks in time, but I have no problem ordering the things of space or perceiving visual patterns.

7. I have retained a kind of childlike innocence, and yet I feel old, pessimistic, and deeply sad when I look at the suffering of the world.

8. I do not read nonverbal cues intuitively, and yet when I walk into a room full of people, I can feel what everyone is feeling without anyone explicitly telling me.

9. I do not believe that I have a disorder, and yet I am unable to do things that most people take for granted.

10. I engage people as though what they say is what they mean, even though I have ample life experience to lead me to the opposite conclusion.

When it comes down to it, the problem of self-advocacy may simply be a problem of language. For autistic people, what it means to see, hear, smell, touch, taste, move through space, relate to other people, form friendships, and be successful is often fundamentally different from what it means to our more typical friends. When others lack this understanding, they can (and usually do) consider autism to be inferior to other modes of experience. I know that I am not inferior to other people, and yet I also know that when I say that I am autistic, many people will either a) assume that I am missing the essential pieces that make one human or b) consider me some sort of amazing anomaly because of my capacity for love and sensitivity. I know that when I block sound and refuse to speak (despite having superb hearing and a capacity to ramble on endlessly), many people will think I am simply being stubborn or perverse. And so, in order to give people an understanding of my needs and my experience, I can’t simply use words like autism, hear, or speak and let their normative, neuro-typical meanings stand. I feel compelled to explain what I mean as an autistic person.

These acts of translation are tiring, and yet, they feel like such important work that I don’t quite know how to manage them. The best I can do, at present, is to choose carefully the time and place in which I engage in translation at all. If I am advocating for myself, fine. I’ll translate and do my best (within the limits of my neurology) to keep it as concise as possible. But if I’m simply trying to enlighten someone who would just as soon go home for dinner, I’m wasting my time.

I must make these distinctions. If I don’t, I won’t have any energy left to do the things that I enjoy.

© 2009 by Rachel Cohen-Rottenberg

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

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

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

You might remember that, a few weeks back, I wrote a post called Creating a Support Network. I had written down all the tasks that I needed help doing, and Bob and I were going to cobble together a list of people who could help me do them. Over the course of the month, however, we’ve realized that while we can enlist the help of others for regular, practical tasks (such as housecleaning and carpooling), we’re going to have difficulty finding help for other, less predictable tasks:

• If a task involves advocacy, finding someone is next to impossible; we live in a rural area, and the chances of finding someone sufficiently knowledgeable about adult autism are slim.
  
• If a task needs doing only once in a while, it will be very hard to find someone to be “on call” to do it.

So, we’ve shifted gears. We have someone cleaning our house once a week, and Bob is going to take care of making sure that the carpooling goes smoothly until Ashlynne gets her license. As for the rest of the tasks, I am experimenting with ways to do them comfortably, and if I can’t find a way, the task will have to go away.

Our Strategy List
Here’s how our strategy list looked as of Sunday night:

Resolved issues

1. Housecleaning.
2. Understanding home and non-profit financials.
3. Food shopping: Rachel shops at the co-op once a week for herself and Ashlynne.
4. Banking: Rachel has begun the process of transferring funds to our local bank.

Tasks for Rachel to try on her own (limiting each attempt to one per day)

1. Going to the therapist’s office.
2. Going to the stationary store, art supplies store, and other relatively quiet places to do errands.
3. Making deposits at the bank.
4. Bringing envelopes or parcels to the post office.
5. Picking up prescriptions and other items at the pharmacy.
6. Moving more funds to our local bank.
7. Finding out what tasks she can do online.

Issues that Bob will work to resolve

1.   Getting Ashlynne where she needs to go until she gets her license.
2.   Finding people in his network of friends to pick up prescriptions, drive, or do other “spur-of-the-moment” tasks when he is ill.
3.   Making an appointment with an attorney to create Advance Directives for Healthcare for both of us.

Issues on which we will improvise

1. Cooking meals. Bob does not mind cooking meals when he is well. For times that he is ill or out of town, we will begin to create an emergency cupboard of canned soup, macaroni and cheese, herbal tea, over-the-counter medication, and other items that will allow Rachel to make simple meals and have symptom-relief medicines available.

2. Accompanying Rachel to doctor or hospital appointments and advocating for her. No one other than Bob knows Rachel’s autism well enough to be a proper advocate. When Bob can be there, he will. When he can’t, Rachel will write a letter to the doctor or hospital ahead of time, stating her needs as an autistic patient (a quiet room in which to wait, sensitivity regarding sensory issues, and so on).

3. Making telephone calls. Bob will make these when he can. When he is not available, Rachel will make them only if necessary, and only so long as she gives herself sufficient time to prepare and to recover.

Adaptive Measures
I now have three—yes, three!—Peltor noise-reduction headsets:

• My original Peltor Optime 101 headset, with a Noise Reduction Rating of 27. I use this one at home when loud noises are coming in from the outside world.
• My new Peltor Optime PTL (Push to Listen) headset, with a Noise Reduction Rating of 25. I use this one for working at the thrift store.
• My even newer Peltor Ultimate 10 headset, in blue, with a Noise Reduction Rating of 30 (the highest for a Peltor headset, as far as I know). I use this one for walks and errands in the outside world.

I also have a number of “I can’t hear you” cards in my purse, explaining why I’m wearing a big headset, why I’m in the store (or bank or post office), and how I intend to pay for everything. If I’m going to become more self-sufficient, I’m going to have to continue my strategy of encountering the outside world as though I am deaf and mute.

I gotta tell ya, I’m lovin’ every minute of it. Well, almost.

People Have to Listen to Loud Music in a Pharmacy WHY?
Yesterday, I decided to try going to the local pharmacy and buying some supplies for our “emergency cupboard.” I knew that I might encounter an itty-bitty problem with LOUD MUSIC THERE, SO I WORE MY PELTOR ULTIMATE 10 HEADSET.

This pharmacy is unlike any that I have ever encountered. The number of employees and pharmacists present at any given time is almost always higher than the number of actual customers in the store. Most of the employees are behind a series of counters at the back, and they spend a great deal of their time on the telephone, taking orders for prescriptions. They all sit, stand, and move around in very close proximity to one another, all talking at the same time, all talking rather loudly, and all listening to very loud rock ‘n roll. The truly amazing thing about the people, though, is that when you come up to the counter, they are very focused, very friendly, and very helpful. Whenever I’ve gone there to fill a prescription, I’ve been so entranced by the mystery of how these people can actually work under these conditions and enjoy themselves that I forget what’s happening to my senses until I get home and stagger in the door.

So, when I set out yesterday afternoon, I knew my adventure might not last long, and as you might have surmised, it didn’t. The walk was wonderful. I could hear very little of what was going on around me. Then, I walked into the pharmacy. I was there for about five minutes, and I had put about five items into my basket, when I couldn’t stand hearing the music anymore. I felt as though someone were screaming right into my ear. Even with my headset, I felt like I was being assaulted by sound. I simply couldn’t concentrate. I finally just put my basket down and went home.

Once I had recovered from the fiasco at the pharmacy, I decided to order all the items online. I found a site that offers free delivery if your order is over a certain amount, and I got everything on my list. Then, I called my insurance company (yes, myself!) and arranged to have my regular prescriptions mailed to my house. If I need some other prescription once in a while, my husband, or my daughter, or a neighbor, or some other nice person will go and get it for me.

One task resolved. Onto the next one!

© 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

I feel like my life just bottomed out.

I’m not sure how it started. It seems to have coincided with a letter that Bob wrote to his daughter. I won’t go into details on it. It was a good, honest letter that spoke with love to her about her ongoing resistance to our marriage and to the choices that Bob has made for his life. In the course of reading it, I found out some more wonderful things that my stepdaughter has to say about me these days: that my autism is  a “choice” I’m making, and that I’m using it to “hide.”

Like I don’t have enough self-esteem problems without hearing bullsh*t like that.

And then, there is the email my husband sent to all the people he was going to see in California. He got back a couple of supportive responses. Of course, because nothing can ever be easy, he also got a very judgmental response from a family member telling him that he’s dealing with the situation all wrong and that he’s disappointing people because of it.

I’ve been counseled not to listen to this kind of thing, but I really have to. I need to listen to how people are reacting because it’s hard on Bob, and he needs to be able to get support from me. The problem is that once I’m done listening and giving him support, I’ve got one more piece of fear and self-loathing to deal with. He knows it, and he tries to tell me that other people’s reactions aren’t about me. In my brain, I know it’s true, but my self-esteem meter ends up falling by several degrees every single time.

Ironically, what gets to me more than anything, is that none of this is about me. I wish it were. I wish it were personal, but it’s not. All of these responses, whether for good or for ill, are directed to Bob and not to me. The people who are supportive and the people who are disappointed are all asking Bob whether he’s taking care of himself in the face of my autism. I am glad that people care about him but, hey, excuse me everyone, I’m the one going through hell with the autism here. Why do these people think he had to cancel his trip? Anybody care to chime in and ask how I’m doing? I mean, people can be disappointed over whatever they want. Everyone gets to be human, and everyone gets their own feelings, but where’s the perspective here? I’m pretty goddamned disappointed with how disabled I am. Would anyone like to address this small fact? Didn’t think so.

The reason all this energy is directed to Bob and not to me is clear. He’s writing to his friends and his family. They aren’t my friends or my family. I have no family, and I still haven’t figured out how to have friends—not really. I have people who consider themselves my friends, but I still don’t know how to be with them and make space for myself. I feel like I’m always tagging along behind them. I haven’t the merest clue about how to talk to another human being, besides Bob, and not go into overload. How can I possibly connect with anyone face-to-face when my mind can’t keep up with the words coming in and can’t figure out how to come up with words in response? This is high-functioning autism? Why, because I only freak out in the privacy of my own home? I feel like I might as well stop talking altogether, wear my ear protection, and check out of anything that looks familiar to me, because everything familiar is just one more reminder of how completely screwed I am.

Last night, all of these feelings flooded over into waves of grief so intense that I could barely move. I was crying inconsolably for hours. Then, I woke up this morning and cried some more.  I’m crying because it feels like God has played one giant series of very cruel jokes on me—that is, in those moments when I believe in God at all. Right now, I hate God with a passion. How could God have put me in this ridiculous body with this ridiculous neurology, put me into a family that abused and rejected me, given me gifts I can’t possibly use, given me a heart that I can’t put into action, and made me this silly little girl who just wants to love people and be loved in return and have everything be okay? Why is it never okay? Why did God give me so much hope when I was a girl? Why? Just to take it all away?

When I married Bob, all I really wanted was to have our little family—my kid and his kids. But now, his stepdaughter has nothing to do with me (despite all my attempts over the years to reach out and support her), his daughter absolutely hates me (despite all my attempts over the years to reach out and support her), and my daughter is so intimidated by Bob’s daughter that she hides in her room while she’s here. My daughter is anything but a fainting lily, so that’s really saying something. Bob’s son and I get along well, but because he lives in the house we used to live in, it’s very hard for me to go there and see him. Too many memories.

So much for my dream of a family.

As if all this weren’t enough, I realized last night that when my daughter goes to college, I won’t be able to visit her. She wants to go to school in California and traveling for me is impossible. So, I’ll see my daughter when she comes back to visit me, but I won’t get to see her life in action. Right now, I’m getting a taste of how it will be, because she’s been at camp for two weeks and she’s called me once. Even last year, she called me more, but this year, she’s too grown up for that. She’s having her life with her friends. I understand that. But it hurts. A lot.

Last night, when we sat down at our Shabbos table, I told Bob that I no longer want to chant any of the prayers we’ve chanted on Shabbos together since the day we met. I don’t believe in them anymore. I don’t believe in God anymore. The God who would play this many cruel jokes on me is no God at all. (And for anyone tempted to proselytize me right now, please don’t.)

While I was sitting at the table, I couldn’t even look at anything. Every single thing on the table seemed to mock me, because I remember buying it with optimism, with the hope of a happy life with friends, family, and community. Another joke. So I just sat there, unable to move. I told my husband I was sorry that I couldn’t chant the prayers anymore, and he said, “That’s all right. I’m going to light the candles tonight to honor our marriage and our commitment to each other. That’s what they symbolize tonight.” Of course, then I only cried more.

Ultimately, I just got tired out and ended up having some food before I fell asleep. I woke up in the middle of the night in a very weird mood. At first it was kind of nice, because it was emptied of everything. Then, I remembered my predicament, and the grief hit me again. Bob woke up and held me. He told me that it was okay to hate God, because it was better than hating myself, which is what I’ve been doing for as long as I can remember. He said that God can take it, but that I can’t. Maybe it’s true. I don’t know.

© 2009 by Rachel Cohen-Rottenberg

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

Bob and I have an appointment to see the doctor on Friday about my blood work and EKG results. When I say “Bob and I have an appointment,” I mean that Bob will be physically present, and that I will be present in the form of a letter that he will bring with him.

Going to the appointment alone was Bob’s idea. He said “It’s always stressful for you to go to the doctor, and this time, you’re dealing with the prospect of discussing tests that you don’t want to have. Since we’ve talked out all the options, why don’t I go to the doctor, discuss any additional test results, and then bring them home to you? Meanwhile, you can write a letter stating your thoughts, and I’ll give it to the doctor.”

Isn’t he a great husband? I think so, too.

So, I wrote and signed a statement giving the doctor permission to talk to Bob about anything related to my health and medical history. Then, I wrote the letter to my doctor. I want to share it on my blog because it provides an example of the way in which writing empowers me by giving me an alternative to sitting in an office, overwhelmed and unable to express myself properly.

Disclaimer: I am not a medical professional or a medical authority, and I am not advocating that anyone follow the path that I am following. What works for me won’t necessarily work for anyone else.

Here is the letter. Some of the information has come from previous posts, so parts of the letter will probably sound familiar to some of you. (I’ve left out my doctor’s name to protect her privacy.)

“Dear Doctor:

A word of explanation: I’m writing this letter because I find it much easier to say things in writing than in person. Because I’m autistic, conversation with even one other person is difficult. I cannot read nonverbal cues, so I can’t use the same kinds of “shortcuts” that neuro-typical people use to understand the meanings behind the words. My brain has to work very, very hard on words alone, and it gets tired very, very easily. After just a few minutes, I am “full,” and I can’t integrate any more information.

I want to let you know my thoughts about the ST depression on my EKG. I’ve done some research as to possible causes. While the ST depression could signal heart disease, I have no risk factors. I exercise regularly and have done so for all of my adult life. I don’t drink alcohol or coffee. I haven’t smoked a cigarette in thirty years. I have never been overweight. My blood pressure is always in the low-to-normal range. I have taken care to eat healthy food since my early 20s, and my diet presently consists of fruit, vegetables, chicken, fish, soy products, tahini, almond butter, whole grains, and very little salt. I have allergies and sensitivities to a wide range of foods, including dairy products, gluten, refined sugar, and hazelnuts. In addition to removing these foods from my diet, I have also removed the processed, high-fat, and high-salt foods that contribute to heart disease.

Other possible causes of an ST depression are:

1) An electrolyte imbalance
I don’t know yet whether an electrolyte problem will show up on the blood work you ordered, but I wouldn’t be surprised if it did. I take a multivitamin, but I do not take any supplements containing potassium, magnesium, or calcium.

2) Positional vertigo
I have a condition called severe gravitational insecurity, a problem with my vestibular system similar to positional vertigo.

3) Stress during the EKG itself
I have appreciated your sensitivity to my sensory needs and your willingness to learn how autism affects me. However, going to any public place is very stressful on my body, and coming to your office is no different. Part of being autistic is feeling that I am always in the range of an unforeseen sensory assault, whether auditory, visual, tactile, or olfactory. For me, auditory overload is a particularly significant problem. Because I have no ability to filter or prioritize auditory stimuli, I have started to use a noise-reduction headset, which has given me my first experience of “background noise.”

Unfortunately, during the EKG, I had no hearing protection, and the woman who administered the test talked continually. She talked mainly about her autistic son, a subject that would have interested me were I not about to have an EKG. When people talk and talk, without understanding that I have a great deal of difficulty processing speech, my nervous system response is extreme. I feel fearful and overstimulated to the point of panic. During my EKG, I was in a state of acute sensory overload. These kinds of responses have been shown to cause ST depressions in otherwise healthy people.

And of course, for some people, ST depressions are a normal part of an EKG, with no ill effects at all.

I understand that it’s your responsibility to suggest an echocardiogram and a cardiac stress test, so I want you understand the impact of these tests on my body. An echocardiogram may seem like a simple test to most people, but for me, going to the hospital, waiting in a room with other people, wearing a gown, having gel put on my body, and having a complete stranger do an ultrasound would put me out of commission for several days afterward. I don’t simply mean that I’d be fatigued. I’d be completely exhausted. I’d have bladder pain, neck soreness, stomach upset, nausea, migraine, and sleep disturbance. I would lose my appetite and my ability to focus. As you can imagine, a 3-5 hour cardiac stress test would amplify these responses by several orders of magnitude. I would be very sick and completely nonfunctional for a week or more.

Tasks that are simple to other people, like going to the grocery store or to the post office, are very difficult for me. Medical tests in a hospital are beyond difficult; they border on the impossible. Unless there is a clear medical need to go through them, I don’t see anything to be gained by having a procedure that is going to make me sick. Therefore, I am going to decline the echocardiogram and the cardiac stress test. I understand there is some risk involved in doing so, but there is also great risk to my well-being if I take the tests at all.

Regarding other medical tests, we’ve talked about scheduling a yearly physical, mammogram, and colonoscopy for the same month each year. While logically this plan makes sense, physically it would be a disaster. One test a month is all I can do, and I cannot have several scheduled in advance. I need to have one test and then recover before making the next appointment. I have started keeping a list of the dates of my tests so that I can see when I am due to have them again.

Because I’m having difficulty seeing clearly out of my glasses, my next medical visit is to the ophthalmologist in September. After that, I will consider having a mammogram, though the level of neurological stress involved is comparable to what would result from an echocardiogram. I definitely do not want to have a colonoscopy each year; my nervous system would have a very bad reaction to it, and I can’t go through it.

It might seem that I am making the wrong trade-offs here. It might seem that I am unwilling to go through a short period of “discomfort” in the service of finding out whether I have a treatable illness. However, please know that in the 50 years that I lived with undiagnosed autism, I drove myself mercilessly against my neurology in ways that have irreparably harmed me. At present, and for the foreseeable future, my most important priorities are to spare my nervous system undue stress and to improve my everyday quality of life—even if that life might be shortened for lack of the proper test at the proper time. I have given this matter a great deal of thought, and I know that this course is the best one for me.

All the best to you,

Rachel Cohen-Rottenberg”

© 2009 by Rachel Cohen-Rottenberg