Journeys with Autism

Something extraordinary has happened: my life feels ordinary. And I mean that in a good way.

Part of the reason is that my withdrawal from the evil benzo continues to go well—not always easily, but well. I’m now down to .4 mg per day. On Monday, I started using the liquid version of the medication, so I don’t have to split my teeny tiny pills into quarters anymore. I am so relieved. I take just one drop in a bit of applesauce, four times a day, and instead of cutting my dose every week, I’m now cutting my dose every three weeks. From what I understand, I need to go slowly from .5 mg to zero because my brain is waking up, and it’s important that it wake up gradually, rather than all at once. So, I’ve made myself a reasonable schedule, my doctor is supportive, and I should be off the meds by the end of the year. Can’t wait…but I have to.

Having tapered off the medication by more than 1.5 mg, I feel alive again. I still have my sensory-sensitive “I don’t-want-to-go-anywhere” days, but even on those days, I force myself to go out for a walk in a quiet place, just to keep my connection to the world intact. I’ve finally figured out that my connection to the world is not limited to the world of human beings, but to all of creation, so I walk and appreciate the trees, and the colors, and the breeze blowing, and even the incredibly humid weather. I carry my camera with me everywhere, and I’ve been taking lots of pictures, which helps me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world has become one amazingly interesting place. I’ve also started drawing and painting, so my eye is growing keener by the day.

But the med withdrawal only explains part of it. Mostly, I’m having an experience that I can only describe as an ever-deepening sense of being fine just as I am. I don’t feel inclined to explain myself, to justify my earplugs, to overcome my lack of small talk, or to pathologize my fascination with the visual world. I don’t feel that I have to stay anywhere any longer than it works for me, or apologize for what I can’t do, because after all, who can do everything anyway? No one I know. Far from it.

Above all, I seem to have made a surprising amount of peace with my essential aloneness. I’ve been reading a book called The Wounded Healer by Henri J.M. Nouwen, and it’s been giving voice to many things I’ve been feeling for a long time. The book is written from a Christian point of view, which makes parts of it very hard going for me, but there are moments in which the author’s theology falls away and the book just sings to me. For example, Nouwen writes that the condition of every human being is to be lonely, and that if we don’t accept our loneliness, we make all kinds of demands of the world that leave us wrecked. From his perspective, the only thing to do is to embrace this loneliness, knowing that it is the experience of all people, and to let others know that they are not the only ones. This task, in and of itself, is a terribly lonely one. Like the bodhisattva who cannot share his experience with many and yet allies himself with all, the person who embraces her loneliness knows that, most of the time, most people are trying desperately to flee their own.

This insight echoes what I’ve long felt: that being autistic, I am no more lonely than anyone else, but that others have many more social opportunities to run from their loneliness than I do. I have to face my aloneness, whether I want to or not. When the day is done, though, and the darkness comes, and people return home to empty houses and the privacy of their own souls, we share a common experience. In describing the life of the minister, Nouwen could very easily be describing our lives as autistic people:

“The painful irony is that the minister, who wants to touch the center of men’s lives, finds himself on the periphery, often pleading in vain for admission. He never seems to be where the action is, where the plans are made, and the strategies discussed. He always seems to arrive at the wrong places at the wrong times with the wrong people, outside the walls of the city when the feast is over…The wound of our loneliness is indeed deep. Maybe we had forgotten it, since there were so many distractions. But our failure to change the world with our good intentions and sincere actions and our undesired displacement to the edges of life have made us aware that the wound is still there…When someone comes with his loneliness to the minister, he can only expect that his loneliness will be understood and felt, so that he no longer has to run away from it but can accept it as an expression of his basic human condition.” (86-92)

These words just knocked me out, in the same way that discovering my autism knocked me out. In both cases, my life suddenly came into focus, and I found a mirror in which I could recognize myself. Now, I no longer go about my daily life looking for the magic key, or the decoder ring, or the person who will unlock the mysteries of the world so that I can enter. I’ve already entered. I’m here. The world belongs to me, as it belongs to every other creature that exists, and I experience things essential to being human. So now, I enjoy my forays into the world. I go to the co-op to buy a few items of food, and I no longer dread it. It’s still not easy to go food shopping. I still have to block my hearing, communicate with my “I can’t hear you” cards, and limit my time and energy so that I don’t overdo it. But somehow, all of that is all right. I look forward to buying food that nourishes me, being kind to people, and enjoying the walk.

I’ve also been going to the art store to buy supplies, and it’s fun. Yes, fun! Yesterday, I ran into two autistic friends there. It felt so good to know others, and to be known. I took out my earplugs a bit and talked. We didn’t talk for a long bit. I know when I’m reaching my limit, and I respect that, and lo and behold, other people do, too. And later on, after I’d looked at every mat and picture frame in the store, I made a bit of conversation with the lovely woman at the cash register, who looked at everything I was purchasing and said, “It looks like you’re going to go home and have fun!” And she was right. I said, “I love coming here because it’s fun to see everything you have, it’s fun to pick out what I want, and then it’s fun to go home and use it!” She seemed pleased. And then I went home, and I rested a bit, and then I got to work framing some photos.

How did I feel? Was I tired? Was I overloaded? Probably. But it was okay anyway.

What’s come into focus for me is that my challenges, my tiredness, my loneliness, my sadness, my confusion, and my fear are nothing extraordinary. When I was measuring myself against an ever-elusive norm of “happiness,” I kept rebelling against all of my so-called “negative” feelings, waiting for them to just go away so that I could be happy. And now I’m happy, precisely because I don’t want them to go away. When they come, I accept them. I even embrace them from time to time, because everything I feel is human, and everything I feel is the lot of every person. And when they go, I accept whatever replaces them. As Nouwen writes so beautifully:

“Many people suffer because of the false supposition on which they have based their lives. That supposition is that there should be no fear or loneliness, no confusion or doubt. But these sufferings can only be dealt with creatively when they are understood as wounds integral to our human condition…No minister can save anyone. He can only offer himself as a guide to fearful people. Yet, paradoxically, it is precisely in this guidance that the first signs of hope become visible. This is so because a shared pain is no longer paralyzing but mobilizing, when understood as a way to liberation. When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope.” (93)

Somehow, his words have had this mobilizing effect on me. Hopefully, as autistic people, we can search for life together, in all its fullness, knowing that we each walk alone, and we all walk together.

© 2010 by Rachel Cohen-Rottenberg

I have begun writing monthly articles on disability issues for our local weekly newspaper. The following is my column for July:

In my last article for The Commons, I wrote about the distance I often feel from the non-autistic world, saying “[I]f you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do.” The feeling was an honest one, and yet, I’ve been troubled by these words from the time I first saw them in print.

I’ve thought long and hard about why, and I finally have an answer. I’ve come to realize that while I sometimes experience myself as living worlds apart from non-autistic people, this feeling is not a function of my autism. I am not actually worlds apart from anyone because I am autistic. I feel worlds apart because the world in which I live is not yet inclusive enough to take my particular set of strengths and sensitivities into account.

In the larger world, two models of disability are always in play. The first is the medical model, which posits that something is wrong with me, something from which I “suffer,” something that must be treated and perhaps someday “cured” by medical intervention. In this model, my autism is a disorder, and I am somewhere “over there,” apart from regular folks, separate and unequal.

I have sometimes found myself trapped by this point of view, mainly because I have imbibed about a half-century of negative ideas about autism and the general condition of being disabled. I had accepted without question the idea that all autistic people would rather be non-autistic, and by extension, that all physically atypical people would rather be typical. After reading the eloquent and searing words of many disabled people, I have come to understand that this point of view is a serious distortion. Many, many of us are proud to be who we are and would not want to be different. The Deaf community is a perfect example of a group that embraces its experience of the world as perfectly valid and celebrates its own unique culture. The Autistic community is beginning to do the same.

Of course, there are disabilities that require medical intervention for health and quality of life. However, not all disabilities fit this model and even when they do, they cannot be entirely defined by it. Personally, I have moved away from the medical model, mainly because it tends to create a hierarchy in which some people’s lives have value and other people’s lives do not. It creates a mindset in which we celebrate the lives of some people, while mourning the lives of others, simply based upon physical difference. I do not accept this way of understanding the richness and complexity of human life. I find it unjust and divisive.

An alternative lens through which to view disability is the social model. According to this model, disability is a social construct. That is, one can only be disabled in relation to an accepted norm. So, all the things I value about myself—my acute sensory sensitivities, my deep ability to empathize, my visual acuity, my ability to enjoy silence and a slow conversational pace—become disabilities simply because I live in a culture that does not value them. For example, because I have hyper-acute hearing, I have to wear earplugs when I go downtown or into any sound-filled environment. Until recently, I’ve thought of my hyper-acute hearing as a problem, because I find it very hard to converse with other people in public or to concentrate in the midst of noise.

But my hearing isn’t a problem in isolation. It’s only a problem because I live in a very loud culture—full of noise, full of words, full of TVs and radios and music playing everywhere I go. If I lived in a quieter culture, my hyper-acute hearing would not be a problem. In fact, when it comes to keeping people safe from harm, it would be an asset. In the same way, if I lived in a culture that valued deliberation and a more measured verbal pace, I wouldn’t have the problem of being constantly left behind. In a society in which impulsive action and rapid speech trump other ways of experiencing life, I cannot possibly keep up.

In the face of this mismatch, the only way for me to stay connected to others is to consistently ask for other people to adjust the environment so that I can be present. For example, at one of the stores in town, I ask a staff person to turn off the music when I come to shop, and whomever I ask is always happy to oblige. Everyone who works at the store wants the place to be accessible to me, and and they know that I cannot operate in an environment with music coming from every speaker. Because the staff is willing to be flexible, I have full access, just like everyone else. In stores with loud music playing, the environment is so aversive that I cannot enter, and full inclusion becomes impossible.

Moreover, when I go to my doctor’s office, I use a text-to-text device in order to communicate. Doing so allows me to avoid coming home in a state of auditory overload. My husband and I had to work long and hard to find a doctor open to this form of communication. Because it was a painful, discouraging, and exhausting process, I feel especially fortunate to have happened upon a sensitive doctor. At my last appointment, in fact, something wonderful happened. After we had been typing back and forth for about a half hour, she said, “I’m exhausted. I’m not used to typing so much. Now I know how you feel with your auditory processing challenges.”

And I replied, “That’s amazing. Writing and typing are so natural to me that I forget that other people could find them difficult.”

It was a perfect moment. She understood me. I understood her. I didn’t feel worlds apart at all. I had a different way of communicating during appointments—that was all. My way of communicating was no better and no worse than anyone else’s. At that moment, I became more than the sum of another person’s preconceptions. I felt myself a part of the world, able to express myself fully, with a presence equal to that of every other human being.

So, yes, if you are typically abled, I sometimes feel that we live worlds apart. But it doesn’t have to be that way. If we lived in a society that took human diversity for granted, that made room for difference as a deeply held value, every one of us would benefit. Our view of one another would become much more expansive, much more respectful, and much more compassionate. Ultimately, we might even see one other as perfectly different and perfectly human.

© 2010 by Rachel Cohen-Rottenberg

I am happy. Why? Well, let me tell you!

I am halfway through my medication taper, and while it’s been a rough road, I am feeling better and better every day. Just the knowledge that I am getting these benzodiazepines out of my system makes me feel good. My mind is clearer, my mood is better, and I feel more resilient. The benzos were literally depressing the hell out of me. They caused me no end of problems, some of which they had originally been prescribed to treat. I’ve learned that there are thousands upon thousands of others who have discovered the same thing, and who are now working hard to say good-bye to these medications forever.

I am going out for long walks every day, whether I feel like it or not, whether it’s raining or not, whether I feel like a train wreck or not. I’ve taken my stationary bike out of my loft and stored it in the garage, because cycling indoors just symbolizes isolation to me. I have to get outside everyday and feel part of the world, and I will continue doing so even when it’s cold out. I’ve done it before, and I will do it again.

I’ve started cooking delicious, healthy meals. I can now make a great tofu curry dish and today, I’m going to make a Mexican-style meal. It’s amazing to enjoy cooking again. I’ve discovered that what overwhelmed me was not the cooking per se, but the feeling that I had to come up with a new dish every other day, instead of just building up my repertoire, one dish at a time, over a more manageable period of time. I’m still learning the concept of “slow and steady.”

I have started using the library, and it feels so calming. It sure is nice to go into a building without piped-in music.

I’m continuing to experiment with alternative communication technology, and I’m studying ASL again. I’m realizing that it’s time to get serious about giving myself alternatives to speech when I need them.

I have met some new autistic people in town! It happened in the oddest way: A local guy named Jesse emailed an ASAN board member in Oregon, looking for an ASAN chapter in Vermont. It just so happens that this ASAN board member in Oregon is also a friend of mine (Hi Elesia!), and told him that I was starting up an ASAN chapter in southern Vermont. (I had corresponded with Elesia some time ago about being the chapter leader here, but hadn’t done much to move it forward.) So, she put us in touch with each other. As it turned out, Jesse is on the spectrum, and works with autistic middle schoolers and high schoolers! He was putting together an event for Autistic Pride Day on June 18, so I showed up for that, and met some new people. Since then, he and I have been emailing and discussing all kinds of things, including ideas for getting an ASAN chapter off the ground here. He and I are both very interested in self-created autistic community and he plans to introduce me to others.

And, last but not least, I have finally remembered what I learned long ago: creating happiness is up to me. For reasons having nothing to do with me, people will not always come through, and I have to be able to maintain my self respect, my dignity, my individuality, and my sense of self. In other words, whatever happens, I have to hold onto my power and use it for my own good and for the good of others. It’s not always easy, but it’s always necessary.

It’s tough to keep learning the same things over and over, but I think that’s what we humans do. We get lost, and then we have to find the way back, again and again.

© 2010 by Rachel Cohen-Rottenberg

Last night, I wrote the following article for submission to my local weekly paper. I’d like to get your comments, feedback, and constructive criticism before I send it in. Please let me know what you think.

Disabled Like Me: An Autistic Woman In Search of Kindred Souls
by Rachel Cohen-Rottenberg

If you are a typically abled person, you and I may have a great deal in common. I am married to a wonderful man. I have a teenage daughter getting ready to spread her wings. I love taking long walks in quiet places. I lose myself in creating things of beauty. I knit, I quilt, I sing, and I write. I try to eat healthy food, to exercise every day, to treat people with kindness, and to give a friendly hello to my neighbors.

Sometimes, I succeed. Sometimes, I don’t. In this regard, I am no different from you.

And yet, if you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do. I cannot go to parties or to restaurants; when too many people talk at once, I can’t distinguish one voice from another, and I become overwhelmed. I can’t go into stores with music playing and talk with others, because I can’t filter out background noise. In fact, there are stores in town that I cannot enter at all. The music is so loud that it assaults my nervous system and literally renders me incapable of thought.

I am able to speak, but sometimes, I have difficulty following the words that other people say. For this reason, talking on the telephone is an experience that I avoid at all costs. I have an extensive written vocabulary, but initiating and maintaining a typical social conversation is often beyond my grasp. Sometimes, I can’t find the words at all; at other times, I can’t find them quickly enough. Even when I find the words, I sometimes need to rest for hours or days afterward in order to recover from the effort.

Then again, there are people with whom I “click,” with whom talking is not a particularly difficult challenge at all. And then there are people with whom I am quite comfortable being almost entirely silent.

Despite my challenges, I do not consider myself a collection of deficits. In fact, I consider my autism my greatest strength. I am acutely empathetic and highly sensitive to all things emotional. I experience the visual world quite vividly and intensely. I have a childlike innocence that I value deeply. I am very direct and honest. I do not understand deception or cruelty. I think associatively and visually, and I arrive at insights and solutions impossible to locate with linear logic. I’m creative, intellectually curious, and fascinated by the diversity of the world. Much goes on beneath the surface.

Unfortunately for all of us—for you and for me—the word autism carries a stigma. I can’t count the number of times I’ve told someone I’m autistic and received a response along the lines of “Oh, I am so shocked and so sorry.” I’ve had friends back away. I’ve had potential allies in the community drop out of sight. I’ve seen people stare rudely at the noise-blocking headset I sometimes wear in public, and then I’ve seen them look away quickly, without a smile, without a wave, without acknowledgment that I am just like them, as though my disability has trumped my humanity.

In the year and a half since my autism diagnosis, I’ve learned firsthand what it means to be disabled. I’ve learned what it means to be invisible, to be marginalized, to be apart, to not be able to keep up, to not be understood, to not be seen as a person of equal value. I’ve known deep loneliness and isolation, and I’ve learned that these experiences are shared by many disabled people, whether our disabilities are visible or not.

I am fortunate in having a husband and a daughter who love me, friends spread throughout the country who support me, and places in the local community in which people welcome me as I am. And yet, I long for the friendship of other developmentally atypical people. I see other disabled people around me, and yet, I have not found a way to reach out directly. My sensory and communicative differences make reaching out problematic. And then, of course, there are people in the community with invisible disabilities, who look “typical” but experience the world in atypical ways. How are we to find each other?

I don’t know a better way than to write, so I am reaching out now, in the best way that I can. It matters not how old you are, what your disability is, or at what “severity” level a medical professional has diagnosed you. I am reaching out to say that I am here, that I would like to find you, and that I would like to affirm and celebrate who we are.

If you would like to connect, you can reach me by email at rachel@journeyswithautism.com. And if you see me around town, feel free to give me a friendly smile and say hello. It will mean the world to me.

Rachel Cohen-Rottenberg is a writer living in Brattleboro. Her memoir The Uncharted Path: My Journey with Late-Diagnosed Autism will be published later this year.

© 2010 by Rachel Cohen-Rottenberg

Bob and I have been having some great conversations lately about the differences between neuro-typical and autistic modes of perception and communication. In the course of these conversations, I’ve felt immensely frustrated, strangely comforted, and very enlightened, sometimes simultaneously. I’ll share the highlights of two of these talks.

The Way Bob Says It Is Not The Way I’d Say It
On Saturday, Bob went to synagogue for the Shabbos morning service, came home for lunch, and then went back for the Torah study in the afternoon. I took a long walk in the morning, in the course of which I met a huge, grey, wonderfully shaggy dog and his person. As you know, I hardly ever take off my headphones and earplugs to talk to anyone, but this dog was just too cool and I had to say something to the woman with him. I knew that I’d last for about a minute or so of conversation, and I did, and it was fine.

The woman who was with the dog obviously loved and appreciated him, and said something like, “You know, he wants to go smell all of these great things and wonders why we can’t smell them, too!” Whoa. Another person who knows that human perception is not all there is. I had been missing these small moments of friendliness with people out on my walks, and as I continued down the street, I realized that I had made the exception for her based entirely on instinct and a sort of childlike delight in her dog. And I thought, “That’s a very good basis on which to make an exception.” When I was done, I didn’t need to go and chat it up with several other people about their canine friends. This dog was an exceptional being, so I made an exception, and it filled me up, and it was fine.

When Bob got home in the afternoon, he told me that he’d run into Fred at shul (the guy who’d magically rendered me invisible) and had “put him out of his misery” concerning my non-response to his email. Fred had copied Bob on his email to me (the one I’d deleted), the email had made Bob “want to weep,” and Bob had gently told Fred that there was nothing he could do to make things better except to keep moving forward. So, of course, the first thing I did was to get defensive about the “want to weep” part, until Bob reassured me that yes, he understood that I was the injured party. And then, of course, the next thing I did was to ask for a blow-by-blow of the conversation, just to make sure that Bob hadn’t put Fred out of his misery without Fred realizing why he was in a state of misery in the first place. I do this a lot, especially when Bob is talking to someone who has been crummy to me. Actually, I’ve been doing it for about eight years now, and it’s gotten old, and boring, and I hate boring, because being bored makes me miserable. This time, though, I’d finally had enough of boring and was able to get beyond making myself miserable. Here’s a synopsis of how the conversation went:

Me: “I’m glad you talked with Fred and resolved things. But did you tell him why things happened as they did?”
Bob: “He understood the whole thing.”
Me: “How do you know that?”
Bob: “I don’t remember all the words. It was clear. He knew what he’d done.”
Me: “But did you use the word invisibility?”
Bob: “No.”
Me: “Why not?”
Bob: “Look, I say things my way.”
Me: “Yeah, but the invisibility thing is really important!”
Bob: [Extremely unsubtle body language that says I'm going to get up and do something else now.]
Me: “Wait, wait, don’t get up! Look, I’m not resolved about this thing. I mean, I told the guy that I needed him to use his words, and that I needed him to be honest, and that I needed him to tell me what was going on, and then he didn’t. Did he understand all that?”
Bob: “Look, I’m not in the guy’s head, and I don’t know what words he’s using to understand things, but he understood that he’d screwed this up and why, okay?”
Me: “Yeah, but how do you know what he understood if he didn’t say so?”
Bob: “I was there. I know.”
Me: “Yeah, but…Oh.”
[Silence]
Bob: “What?”
Me: “This is a neuro-typical thing, isn’t it? You say words, and he says words, and you do this whole nonverbal dance, and you somehow get it, and it’s done, and it’s in your own language. And then you come home and you say it to me. And then I try to translate it back into my language, and it doesn’t translate well.”
Bob: “I think that’s right.”
Me: “You know, from now on, I think you should handle these kinds of conversations. They’re a mystery to me, but you’re very good at them.”
Bob: “Thanks. I try.”
Me: “I know. I don’t give you enough credit.”
Bob: “I know. And you do really well speaking your language to people who understand you. It’s not your fault that neuro-typical people so often don’t understand what you’re talking about, or can’t fathom how sensitive you are or what you need from them.”
Me: “Thank you, honey. I love you.”
Bob: “I love you, too.”

So here was a day in which I came to two very important conclusions: 1) If I’m going to talk to an apparently neuro-typical stranger, keep it short and make sure it’s for a very good reason, and 2) let Bob be neuro-typical and handle things in his own way, because after all, he is completely supportive of my being autistic and handling things in my own way. (I think I’ve got that reciprocity thing down now.)

I Stand By the Side of the Road and I Still End Up In a Crash
The other day, Bob and I were driving down the highway, and I was talking about my frustration with socializing and making friends with neuro-typical people. One of things that became clear is that all of my challenges started showing up when I left the controlled situation of the workplace in 2003 and entered the completely chaotic situation of unstructured human interaction.

In the software industry, I did very well. I lasted 15 years, much longer than I’ve lasted in any other group of people. Because it was a limited, goal-oriented situation, it gave me the opportunity to do one of the things I do best: observe process. I figured out how meetings worked, what people needed from me, how to set limits, how to keep from working overtime, how to get what I needed to do my job, and so forth. I moved from job to job, but each time, I moved to a better job, and I did so based on my reputation, both personal and professional. Plus, working in the software industry coincided with a number of other successes: marriage, parenting, buying a house, and becoming part of a neighborhood.

And then, I left work to become a full-time mom and oy, all my troubles started. All of a sudden, I couldn’t navigate. True, I had entered hostile territory in my old community, but not every single person there was hostile, and a neuro-typical person might have handled the situation with more, shall we say, subtlety? I handled the situation with almost nothing except honesty and directness, because after all, isn’t that what Judaism teaches? Thou shalt not lie? And isn’t that what all my years in therapy had led me to believe I was destined to do—state my needs and feelings with clarity and without apology? So what was the problem? Why was everyone so upset when I kept speaking my mind and getting down to business? The more I tried, the worse it got. I’m not saying that I was to blame. Not at all. I’m just saying that I didn’t understand how to do it any other way.

But now, I’m starting to see that the way I do it has caused me to collide with other people and has allowed them to collide with me. When it’s over, there’s usually a scene of twisted metal and steam rising from cracked radiators, and I’m always wondering what the hell happened. Again. Just like last time. Over. And over. And over. And over.

In the course of my conversation with Bob in the car, I began to understand why this pattern has gone on for so long, and that I am already moving to a different paradigm. Here’s basically how the conversation went:

Me: “I know that neuro-typical people often find me rather blunt and feel offended by me. And it’s very weird to me, because in my sensory and emotional experience of the world, I feel like I’m getting hit with a blunt instrument a fair amount of the time. It’s not that everyone has ill will toward me. They don’t. It’s just how acutely I feel things. Most people don’t know how sensitive I am, and so they can’t understand how they affect me. And I don’t understand how important all their social rules and nonverbals signals are, so I don’t understand how difficult I can be for people to deal with. I just think that all that social crap—I mean stuff—is bullshit.”
Bob: “I know. There definitely seems to be a difference in the way that neuro-typical and autistic people experience bluntness.”
Me: “So how do neuro-typical people experience it?”
Bob: “Well, for us, there are two levels to navigating socially. One level is knowing what you want. The other level is trying to make sure not to crash into people’s sensibilities. It’s as though social life is like driving down the highway we’re on. You have to know where you’re going and how to get there. But if that’s all you know, you’re going to cause an accident, because you won’t be looking in your rearview mirrors, you won’t be watching the flow of traffic, you won’t know when to slow down, or speed up, or let someone into the lane, or pass them. Everything works on a highway if everyone is paying attention to everything. But now and then, you get someone going 95 miles per hour who insists on switching lanes constantly, driving in the breakdown lane, and getting past everyone, because he just has to get where he’s going and that’s all he can think about. That’s when the flow is threatened and people start crashing into one another.”
Me: “Okay, so I recognize myself in the person who just wants to get there. I recognize myself so well that I’ve learned to hang back in a major way and let everyone else go around me. In fact, I’ve gotten out of the damned car altogether, and yet, I still end up in crashes.”
Bob: “What do you mean, exactly?”
Me: “Take the situation with Fred. I didn’t walk into a complicated social situation with Fred. I kept it simple. I know better than to drive a car on a highway. I’ve learned my lesson. I wasn’t even in a car. I was standing by the side of the road, looking at the trees, waiting for him to get done driving hither and yon and meet up with me. After awhile, I realized he wasn’t going to come by and get me, and that made me sad, but I dealt with it. And then, all of a sudden, he broadsided me. I was just standing by the side of the goddamned road, looking at the trees blossoming, and the next thing I knew, I was lying next to the retaining wall and my head hurt really bad.”
Bob: “I see what you mean.”
Me: “You know, whenever this has happened in the past, I’ve thought, well, screw this, I’m getting off this highway and finding me another highway, because the people on this highway are crazed. And then I go and find another highway, and I stand by the side of the road, and bang! There I go, flying through the air, just when I’m enjoying the view. And I think, well, screw this, I’m getting off this highway, because the people on this highway are crazed. But now, after all these years, I can’t keep looking for new highways. They’re too dangerous. I imagine that there must be state police shouting at me on their bullhorns that pedestrians are not allowed on the roadway, and there must be people leaning on their horns as they swerve away from me, and the ones who come a little too close must be larger than they appear in the mirror, but somehow, I can’t see or hear them.”
Bob: “I think that’s true. So what do you do?”
Me: “I need to go find myself a bike path. Not a bike path where people wear spandex and race by you like they’re on the Tour de France. I mean a bike path where people are taking leisurely rides and other people are standing by the side of the road.”
Bob: “Sounds like a plan.”

So how do I find these other souls on this mysterious bike path? Easy. I write an article for my local paper, asking “Where are all the other autistic or otherwise atypical people in this community, because I’ve only met two others, and it’s statistically impossible that we are the only ones here.”

I know, I know. It’s very direct. But that’s just me.

© 2010 by Rachel Cohen-Rottenberg

In my never-ending quest to find a few safe places to hang out that don’t include my house, I decided to consider (duh!) the library. I used to volunteer there packaging books for inter-library loans, and I left mainly because I was only beginning to understand the impact of autism on my body and soul. When I left, I told the staff I was leaving to take care of my health, and they all signed a really beautiful card to wish me well. Sigh. These kinds of things mean a lot to me. So the people there are very nice and the place feels very safe.

However, I haven’t been back there since. My resistance stems mainly from the fact that they used to know me as this still somewhat passable NT-looking person, and now I’m not. I feel like I’d be walking into an old picture and getting confused about how to navigate.

So, last night, I finally realized (duh!) that I could send them an email and create a new picture. Here’s the note I sent them today via their website:

“Hi—

You might remember me. I used to volunteer at the library packaging ILLs. I’m writing to let you know how I am so that I can get the services that I need at the library.

In the past year and a half, I have been diagnosed with a number of disabilities. I am autistic with extreme auditory and other sensory sensitivities, so much so that I usually have to block sound when I am out in public. When I come into the library, I will probably be wearing a blue noise-blocking headset, a set of earplugs, or both.

Autism is a very inconsistent condition. Sometimes, I’m able to talk for a short time without a lot of effort. At other times, a short conversation is so difficult that it will leave me with severe body aches for days. There may be some days that all I can do is smile and wave, and a smile and wave in return is the perfect response. I would ask that, when I come to the library, you take my lead regarding how I communicate. When I go about my life in public and need something specific, I generally play it safe and communicate in writing. I am looking into assistive communication technology, so I may have an iPad or some other interesting device with me. It’s a work in progress.

Please remember that the changes you will see are superficial. I am still the same person I ever was. I just can’t navigate in typical ways anymore.

I would appreciate it if you would confirm receipt of this note, and especially if you would share it with the staff.

Many thanks, and all the best to everyone,
Rachel Cohen-Rottenberg”

Let’s see what happens, shall we?

© 2010 by Rachel Cohen-Rottenberg

Last night, I had a killer migraine. Usually, when I feel a migraine coming on, I take a tablet of Sumatriptan, which stops the migraine in its tracks. It has always worked—until last night. The migraine didn’t respond to medication at all. By 8 pm, I was so nauseous and shaky that I needed Bob to help me navigate to the living room so I could lie down. I couldn’t bear to open my eyes; any kind of light was like torture. I couldn’t even look at the fire in the woodstove. I had the dry heaves, and at one point, I went into shutdown and couldn’t speak or move at all.

But mostly, for about two hours, I stimmed almost constantly—rocking, hand flapping, hitting my head with my fist, over and over. It actually helped—a lot. I’m not sure how much it helped to reduce the pain, but it certainly soothed me in the midst of it. As I went through the whole ordeal, it became clear that a lot of pressure has been building in me. Some of it has to do with Bob’s daughter, and even more of it has to do with my almost continuous anxiety and my drive to figure things out. My poor mind felt so incredibly tired last night, as though I’d overworked it to the point that it was literally screaming at me to stop.

Once my defenses were down, I finally saw what most of the pressure is about: I feel like a freak.

There, I said it. I feel like a freak. I feel like a freak to the point that I don’t want to go outside and be seen with my stupid headset on, or try to talk to anyone, or do anything out there at all. I just want to hide. Watching how naturally the stimming came to me, and how much it helped, brought the issue out into the open. I thought, “Wow, I’m really autistic. Look at what I’m doing—all those things that I’ve been taught are sick and strange and wrong.” Then I realized that I feel sick and strange and wrong, pretty much all of the time, and I’m exhausted by it. It takes so much work to defend against the feeling, to avoid it, to tip-toe around it, to change it. Last night, I hit a wall of exhaustion, and my feelings about myself came pouring out.

I feel like my whole life is strategy. The spring is here, the days are warmer, and I want to go out and enjoy it all. But how do I deal with the neighbors? Do I take off my headset and talk to them? If so, how often? Will they think I’m anti-social if I don’t? Should I have Bob explain the situation to them? All these questions have been circulating through my mind for weeks, and I can’t find any answers. I’m afraid to try anything. I’m completely stuck.

Feeling like a freak puts me in a terrible trap. If people believe that I’m really autistic, I’m afraid that they’ll see my headset and my silence as bizarre, and they’ll just ignore me, which will make me feel even more isolated than I already feel. If they don’t think I’m autistic, or if they think I’m only “mildly” autistic (whatever that means), then they’ll think I’m putting on an act. If they only knew that my whole life up to this point has been an act! I wish there were a third alternative, that went something like: “They will know that the way I am is normal for me, and they will meet me where I am.” But I can’t depend on that response, to put it mildly. At the thrift store, they meet me where I am more often than not, but I’m always afraid that all that will go away.

I’m always afraid, it seems. Sometimes, it lays me low, and sometimes, I just carry it and keep going. Physically and emotionally, I feel things so acutely that it’s hard to feel resilient, and it’s hard to know when something will total me.
 
I still want to be normal, so much. Not because normal is better, but because it’s physically easier. I’d give almost anything for one day in which I could do anything I want without risk of overload. I’d give almost anything for one day in which I could keep a conversation with a neighbor going for as long as I want. I’d give almost anything to be able to go to a restaurant or a movie without needing three days to recuperate.

But that’s not my life, and very little has prepared me for who I really am.

Even as I write this, I know that someone will read it and think, “Wow, so I’m not the only one.” And then I’ll remember that I’m not the only one, either.

© 2010 by Rachel Cohen-Rottenberg

Recently, a friend sent me a link to an article written by a young man named Jacob Artson. Jacob is 17, and describes himself as nonverbal, severely autistic, and developmentally disabled. His article, Encumbered and Blessed, is a very moving, honest, and insightful treatment of his experience of inclusion and exclusion in diverse communities.

Jacob’s father is Rabbi Bradley Shavit Artson, and the article appears on the website for the United Synagogue of Conservative Judaism (USCJ). I have no affiliation with the USCJ, and it is not my intention to proselytize for Judaism by referring you to this article. (I do not allow proselytizing on this blog or in my life.)

I am posting the link only because the article is an absolute gem. I’d be very interested in hearing your responses to it.

© 2010 by Rachel Cohen-Rottenberg

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