Journeys with Autism

As most of you know, I volunteer for a thrift store that benefits the local area hospice. Several weeks ago, I told the store manager that I sew, and since then, I’ve been up to my elbows in different kinds of mending and restoration projects. I even bought a sewing machine to help the process along, although I sew by hand when mending quilts that are hand stitched.

A couple of weeks ago, the store manager showed me some chair cushions that she wanted me to re-cover, so we started with the ugliest ones. They are (or should I say, were) ugly in a kind of 1970s polyester way. At first, I tried replacing the material altogether, but then decided that it made more sense to sew new material onto what was already there. For the front and back of each cover, I used my sewing machine. For the side panels, which had to be sewn around a zippered opening, I sewed by hand. Here is a picture of the two covers. The one on the right is the original, and the one on the left is my beautification of it:

Yes, the border around the original was made of a kind of tinsel-like gold color that should simply be illegal to use in a home furnishing. It’s an affront to the senses. When I wasn’t working on the covers, I had to hide them under other material in my loft so that I couldn’t accidentally catch sight of them.

I brought the finished cushions into the store yesterday, and the manager was so happy with them that she brought the chair up right away to sell. When I went in today to take a picture of it, I learned that it had already been sold, but was being held for pickup downstairs. So I went down and took some photos of it. Here’s the best one:

I love doing this work, and the people at the store are nearly ecstatic about it. Everyone seems to have adjusted to my not talking or hearing, and they are very appreciative of what I do. They write me notes, show me what to do, and treat me with a lot of kindness. I’m getting less and less self-conscious about my headset and my silence, and more and more able to rest easy in the knowledge that I use them to work with my disability (in the same way that I would use a wheelchair if I couldn’t walk).

It’s good to feel part of something again. It’s been a long time coming.

© 2010 by Rachel Cohen-Rottenberg

When I first started therapy (in 1983), I learned that I had to work on improving my self-image. I learned that I had low self-worth, and that if I worked very, very hard, my sense of self-worth would improve.

And it did. I think. At least, I was under the impression that it improved, because I was feeling ever more confident about my abilities as a working woman, a wife, and a mother.

But now I’m experiencing a new phenomenon. I no longer have low self-worth. What I have is no self-worth. At all.

That’s right. None.

I am not exaggerating. Last night, I looked at myself and realized that there is a big empty space where my self-worth ought to be. How my self-worth snuck off without my noticing is beyond my comprehension. But it’s gone. I’ve looked, and it just ain’t there.

Perhaps it went like this: Seven years ago, when I married Bob, I quit my full-time job to become a full-time homeschooling mom; then, a few years later, my daughter went to regular school, and the homeschooling ended. So, in the past seven years, two of the most important ways that I built my self-esteem have gone away: working at a job and homeschooling Ashlynne. During much of that time, I lived in a community that was not very welcoming to me (to put it mildly), and that experience further contributed to my self-esteem issues.

But, you see, I still had “self-esteem issues.” There was some self-esteem with which to work. Now, it’s just up and left.

It’s possible that with working and homeschooling gone, my autism diagnosis set off a massive identity crisis, followed by the realization that my entire way of living had to change, followed by a toxic explosion of internalized disabilism. Whatever the reason, I feel no self-worth at all. I do a beautiful job repairing a quilt, and all I can see are the imperfections in my work. I knit my husband a sweater from the Icelandic wool he spun himself, and all I can see are all the mistakes I made. Everyone in creation is telling my husband what a wonderful sweater he’s wearing, and it has no impact on me at all. People tell me how much they like my writing, and it doesn’t penetrate the dense fog I’m living in.

It’s gotten me questioning how one builds self-worth in the first place. I mean, did I ever have self-worth, or did I just do a lot of things that convinced me I did? Having a job and being a homeschooling mother are both wonderful, but they were always going to end; therefore, I based my self-esteem on impermanent things. That seems like a dangerous move from where I sit right now.

I used to have a decent sense of myself because I always felt that I could fake it well enough to get by. I could make pleasant conversation; I could go to soccer games and act like I belonged; I could chat it up with the neighbors about anything and everything. But working hard to fake it no longer applies. I walk around with a headset and don’t speak or hear very much at all in the outside world. Pretending to be normal basically went up in smoke once I realized that I had to wear a device in public that most people use when mowing the lawn.

Worse yet, my conversations with my therapist seem to be having a negative impact on me. For instance, last week, I told him that I feel like I need to stop talking entirely when I’m out in the world. He kept saying that perhaps it wasn’t all that black and white, that I could be more moderate, check in with myself, and talk more when I wanted, and less when I didn’t. What he doesn’t understand is that for me, moderation and autism do not mix. Moderation can only apply when one has a fairly moderate experience of the world. When one’s experience of the world is extreme and intense, a moderate solution can be worse than none at all.

I’m not sure that my therapist realizes that the minute I open my mouth, I’m already in way over my head. I crave communication. I want to keep talking. So much. But I’m playing catchup with everyone. I’m always a few clicks behind the conversation, and I have to make a tremendous effort to follow what people are saying. When it comes time to speak, I have to call on resources I don’t often have. Plus, I am so used to working hard at speaking that I forget that I’m actually working hard at speaking. It’s always a strain, but the strain is so familiar that I don’t even notice something is wrong until it’s way too late and everything in my body hurts.

I know that my therapist is responding to my upset about my social isolation and trying to come up with solutions, but I don’t need solutions. Unless I happen to run into a dozen autistic people in my local community, my social isolation will remain. So perhaps a better strategy would be to talk about how to handle the seriousness of my disabilities and their consequences for my life. I will never be able to walk through the world as a hearing person. I will never be able to have a relaxed conversation out in public. I will never be able to pass for normal again. I would like some help dealing emotionally with the gravity of the situation, not all kinds of ideas about moderation that simply cannot work for me.

Some years ago, I ran across a book called Shambhala: The Sacred Path of the Warrior by Chogyam Trungpa. The author writes about the spiritual warrior in a way that describes the impulses and demands of my autistic experience. I was drawn to the following words even before I knew about my autism:

“[The spiritual warrior] has no room and no desire to manipulate situations. He is able to be, quite fearlessly, what he is.

[P]aradoxically, the warrior finds himself more alone. He is like an island sitting alone in the middle of a lake. Occasional ferry boats and commuters go back and forth between the shore and the island, but all that activity only expresses the further loneliness, or aloneness, of the island. Although the warrior’s life is dedicated to helping others, he realizes that he will never be able to completely share his experience with others. The fullness of his experience is his own, and he must live with his own truth. Yet he is more and more in love with the world. That combination of love affair and loneliness is what enables the warrior to constantly reach out to help others. By renouncing his private world, the warrior discovers a greater universe and a fuller and fuller broken heart. This is not something to feel bad about: it is a cause for rejoicing. It is entering the warrior’s world.”

I’m not sure I’m ready to rejoice.

© 2010 by Rachel Cohen-Rottenberg

Jenn Power is a typically abled woman who lives with disabled people in an intentional community called L’Arche Cape Breton. She and her husband are the parents of twin boys with Down Syndrome. A week or so ago, I was reading her blog, Possibilities, when I came upon a post about some harsh words directed at her on the New York Times blog Motherlode. Apparently, this community leader and loving mother had committed the unpardonable sin of saying out loud that she would not want to cure her sons of Down Syndrome. I was especially struck by these words:

“I know that my position is a minority one. When you throw your lot in with marginalized people, you get marginalized. I understand that.”

Reading these words set off a wave of new realizations about my autism, my relationship with Bob, our ongoing struggles, and new possibilities for our lives.

Many of us autistic folk have talked and written about living on the margins, observing group dynamics, and deciding how to act. That feeling of living on the margins has always felt so precarious to me. I’ve always felt as though I were balancing on a fence post, living in perpetual fear of falling over backward.

So today, instead of thinking about “living on the margins,” I started thinking about “living in the margins.” The more I thought about it, the more I experienced a greater sense of spaciousness. All things being equal, I’d prefer to be able to come and go from the margins to the center and back again, but all things are not equal. In this society, I have a disability called autism, and I live in the margins of the culture all the time.

Because I’m also white, American, middle-class, and well-educated, the margins I live in are quite a bit wider and more elastic than the margins in which others live. In other words, I don’t for a minute believe that being autistic erases all other privilege, nor do I believe that my privilege can ever erase my marginalization. If anything, being autistic and otherwise privileged creates an odd kind of self-perpetuating expectation. I often think that, given my privilege, I should be “higher functioning.” I should be much more “normal.” I should feel a greater sense of “belonging.” I should be able to figure out how to live somewhere other than in the margins.

But of course, I can’t. That’s what being disabled is all about in the world as presently constituted.

Ever since Bob and I made our relationship known eight years ago, I have felt progressively marginalized. The first attempt to marginalize me took a very tangible form: one person on the synagogue board of directors suggested that Bob should leave me, and that I should leave the community entirely. The response of the other board members? Silence. While Bob did not leave me, we did leave the synagogue community, because when people saw us together, they spoke with Bob and ignored me completely. The same kinds of things happened in the larger community.

Virtually all of us on the spectrum have had that feeling of being hidden in plain sight, but until recently, I had never thought of it as an experience of marginalization. Instead, for years, after every outing, Bob and I would have long, tedious, upsetting discussions about how he got all the attention, about the ways in which people were ignoring me, about the fact that he didn’t step in and make it stop, and about how powerless and angry I felt. Because we couldn’t define what was going on in terms that made any sense, these discussions were exhausting and unproductive. We just kept having the same argument, over and over.

After I read Jenn’s piece, Bob and I had a long talk about marginalization, and suddenly, I realized why I had been so angry. I realized that Bob had never consciously given up his privilege of being “normal” and joined me in being marginalized. Not that I wish being marginalized on him or on anyone else, mind you, but do we really have another choice? After all, as Jenn said, “When you throw your lot in with marginalized people, you get marginalized.” Isn’t that what happens to parents of autistic children? To the family members of autistic adults? How many neuro-typical people want to befriend them, or listen to them talk about their loved ones? Not many.

Although Bob is quite wonderful, I’m tired of seeing him as the de facto prototype of “normal.” Some time ago, he said that it is hard to go out with me because I have to block sound, and he doesn’t like having to talk loudly in order for me to hear him. I’ve always felt uncomfortable with the impasse in which that leaves us, but I hadn’t been able to figure out how to get past it. Finally, in the midst of our discussion about marginalization, I blurted out words to the effect that if I’m going to feel human, he really needs to come into my world and stand next to me. Maybe, when we go out walking or to a restaurant, we don’t talk at all. Or maybe he talks loudly and feels a bit conspicuous. I don’t know. But uncovering my ears out in public really can’t be part of the plan, and I can’t stay home all the time, either.

For both our sakes, I don’t want Bob by my side 24/7, but our lives are becoming increasingly separate, and it bothers me. In the course of our conversation, he said that he’s willing to drop a lot of activities in the outside world, start from scratch here at home, put our relationship first, navigate the world together, and see what possibilities flow from there.

To get ourselves started, we did something simple: we went grocery shopping together. Part of our agreement was that “together” was the operative word. If I’m alone at the grocery store, it’s challenging, but I stay completely focused on getting my shopping done, and it works. However, when I’m with Bob, I’m more open, and if someone else comes in and starts talking to Bob, I feel very disoriented in an already challenging situation. So, if someone were to come over to talk, we agreed that Bob could say whatever he needed to say in order to keep his focus on me. In fact, I gave him permission to say just about anything about me he pleased: that I’m disabled, autistic, dazed, confused, weird, and undeniably odd. I don’t care. It just doesn’t matter to me anymore.

Fortunately, no one came up to Bob and wanted to talk, so we got our shopping done easily and had a very good time of it. Even lugging the groceries home was fun!

As we’ve gone through this process, Bob has realized that his ongoing resistance to standing in the margins with me derives from the fact that the only time he’s ever focused on being with a disabled partner, she was dying. Part of him hasn’t wanted to accept that I’m disabled because, when the thought arises, his mind goes to a very sad, scared place. But I’m not dying. On the contrary: I’m fighting like mad to feel part of the world, to feel that my life is meaningful, to feel less afraid and more powerful. I’m fighting to widen the margins in which I live, for myself and for other people.

I’ll let you know how it goes.

© 2010 by Rachel Cohen-Rottenberg

You’ve all been so supportive of me in my grief and frustration these past few months, and it’s meant a lot to me. Perhaps I needed to bottom out a few times and cry a lot of tears in order to open up the space for better things to come into my life. I’m not sure. In any case, all kinds of very promising things have been happening for me lately, and I want to share them. While I’m doing my level best not to get attached to outcomes, I can’t help but feel very positive and excited.

Continuing Support from the Deaf Community
Karen, my contact at the school for the Deaf, continues to be an absolute gem. In every interaction, she listens to me, she thinks about solutions, she gives me thoughtful answers, and best of all, she keeps my spirits up. What’s more, she does it all by email. We haven’t even met in person yet!

As an example of what I admire about this woman, I’ll tell you how she responded when I described my auditory and visual difficulties with the ASL class. First, she said that she’d have no problem finding me an ASL tutor, but that she was concerned about the expense. She urged me to look for some kind of program that would help defray the cost, and she gave me a place to start. She also said that if I hit a snag, I should let her know, and she’d help me brainstorm further options.

Next, she suggested that I get specific information about what kind of volunteer help is needed in the school library. With my sensory sensitivities, she said, volunteering in the library might not work. As it turns out, she was right to be concerned. The library tends to be noisy and full of activity. When I told her what I’d found out, and asked whether she could suggest some other options for volunteering, her response was so insightful and so helpful that I could hardly believe my eyes:

“Oh yes I can think of volunteer opportunities for you! The challenge is finding you something where you control your own interactions with others, I think. The newsletter seems like it could be a good one because you’d be able to correspond mainly via email, control your level of input, and get to know people here at the same time. The drawback is that it’s not going to be a good bridge to you learning sign, because I can’t sign yet either. I’ll ask a couple other people for ideas too and get back to you.”

In a follow-up email, she had even more ideas for things I might do, and I’m excited about the possibilities. I won’t write about specifics at the moment; when we get something definite in place, I’ll let you all know how it’s going.

Meeting Up with Another Local Aspie
I’ve been feeling kind of sad about my relationship with my first local Aspie friend. Our sensory sensitivities and social needs are so different that it’s been difficult to figure out a way to hang out. She’s a great person, and we’ve been continuing our friendship by email, but we’re both disappointed that we haven’t come up with a strategy for spending time together.

Meanwhile, I met another Aspie woman in town who saw my article in the local paper and follows my blog. We got together this weekend, and somehow, we just clicked. The verbal pacing was right, our sensory sensitivities seem compatible, and we have some very specific interests in common. So yay! Another promising beginning.

Plans to Meet Up with Yet Another Autistic Person 
In one of the many newsletters that find their way into our house, I saw a classified ad about part-time respite care for a 50-year-old, nonverbal, autistic woman. I wasn’t looking for a job, so I didn’t pay much attention to the ad, except that the words “50-year-old, nonverbal, autistic woman” kept running across my mental screen for weeks. I thought, “You know, I’d like to meet this woman. Why not respond to the ad and say so?”  I wrote an email to the person who had placed the ad, explaining that I’m 51, that I’m autistic, that I navigate the world outside my home as though I’m deaf and nonverbal, and that I was hoping to make a connection with the person he’d mentioned in the ad.

Getting any response seemed like a long shot, since I really wasn’t responding to the purpose of the ad. However, I probably should have bought lottery tickets last week, because taking a long shot paid off in a big way. I got a response, and it was a very enthusiastic one, too. Apparently, the woman herself does not use the computer, but she likes hanging out with friendly people, taking walks, going to the YMCA, and so forth. She is in a shared living situation, and the fellow in whose home she resides clearly likes and respects her. Because I’m not driving anymore, he is willing to drive her up to my house when we meet. So I am very glad to have made this connection.

She and I will be spending a couple of hours together on Thursday. I am looking forward to it very much. I don’t feel any sort of anxiety about this new person, which is very unusual for me. When I meet people for the first time, I’m usually quite nervous. In this case, I suppose it’s the lack of social pressure that’s responsible for the happy sense of calm I feel. She and I aren’t going to talk with words, so I will have to find other ways to listen, to respond, and to communicate. Instead of making me nervous, the prospect sounds absolutely wonderful. It will be a challenge, but a good challenge, and something that I want to be able to do. My natural affinity is to people at the margins (no surprise there), and I’m learning to enjoy my own silence, so I’m feeling very optimistic about our time together.

So many possibilities! Good things are happening.

© 2009 by Rachel Cohen-Rottenberg

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 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