Archive for Communication

Across the Great Divide

April 27, 2010 Rachel Communication, Community, Friendship, Modes of Thought, Sensory Processing Issues, Spectrum Pride

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

5 comments

That Old Invisibility Thing

April 18, 2010 Rachel Ableism, Communication, Disabilities, Friendship

Yes, my friends, it’s happened again. I have been rendered invisible. Not by a neuro-typical stranger. Not at the co-op. Not in western Franklin County Massachusetts, the scene of the horror of my collective shunning. Noooooo. I would have expected all that.

No, my friends. I have been rendered invisible by a neuro-typical friend. By a friend with whom I had discussed the whole invisibility thing. By a friend with whom I had discussed the whole “people seeing Bob as a real person and me not as a person at all” thing. By a friend who had read my blog and had made a commitment to getting together once a month, and who had told me that if it didn’t happen once in a while, it was because he was busy with his family and his work, and that I shouldn’t worry, and that we’d work it out and make it happen: his words, not mine.

I know, I know. I’m such an idiot, believing what people say and all that. Like I have a choice.

And the thing is, this is a really nice person. I mean, I may not pick up nonverbals, but my empathic intuition is excellent, and I’ve never gotten any kind of mean, underhanded, not-what-he-seems kind of vibe from this person. He’s just a sweet guy. What could go wrong? So, we got together in December for dinner, and we had a nice time, and he said he was looking forward to more, and then it didn’t work out for January, and the last email I sent was in January, and I hadn’t heard since, but I figured, okay, he’s busy with his family and his work. I let it ride. I was being flexible.

The next thing I know, I get an email from Bob on Friday, in which he forwarded an email from this friend (who I’ll now call Fred). Fred had sent this email only to Bob, inquiring as to whether he might get a grant from our non-profit for a project he’s doing, and whether it might be appropriate to meet just with Bob, or with Bob and me. Did he copy me on this email, or put my name in the salutation, or ask me whether I might want to meet with him, or address it to me in any way, shape, or form? Noooooo. Of course not. And he knows that I am involved in the non-profit because I co-founded it and co-direct it with Bob, and because the last time we gave Fred a grant, he came and talked with both of us together.

I am so done with this shit. So, so done. Every time this happens, I have the illusion that another piece of me has been seared out of my being, and that illusion needs to stop. Now.

So I said, “Time to stand up for myself. No more second chances for anyone who pulls this shit. No more trying to explain it till I’m blue in the face. Time to tell it like it is. For me. Not for Fred, not for Bob, not for God, not for the Man in the Moon, but for me, so that I get to maintain some shred of self-respect.” So I sent Fred the following email:

“Dear Fred,

Bob forwarded your message to me regarding your project. We’ve discussed the matter in detail, and I’m afraid that the answer is no: our organization will not be able to financially support this project, nor any other project you might be planning in the future.

The reason has nothing to do with your project, and everything to do with the fact that you sent your email to Bob rather than addressing it to both of us and sending us each a copy. After everything that Bob and I have gone through–after all the disrespect that people have shown our partnership, after all the discussions that you, Bob, and I have had about it–it was very shocking to me that you would absent me from your initial request. I was especially dismayed by it, given that you had shown a desire to rekindle our friendship, and had expressed a hope that we could meet once a month. My last attempt to set up a meeting with you was in January, and I was giving you the space to be busy with your life, hoping that you would contact me again. I see now that you were not so busy that you could not contact Bob.

I have to say this, straight out: I am a human being. Disabilities or not, I am of equal worth to every other human being on the planet. I have an absolute right to have people respect me, to have people include me, to have people communicate with me in a way that works for me, and to have people take the time to meet me where I am. If people choose not to do so, I will no longer recede into the shadows and apologize for being sensitive, for being disabled, or for being upset. I get to be here, too. As I am.

I more than welcome your continued presence in Bob’s life. I know it means a lot to both of you, and I want it to continue. But if you are now inclined to make any further attempts in my direction–please don’t.

Rachel”

You’ll never guess what happened? Are you ready? I got an email from him. A half hour later. Right after I said, “[I]f you are now inclined to make any further attempts in my direction–please don’t.” What part of that sentence did he not understand? What do I have to do to get some respect from him? Apparently, I have no control over the matter, except to completely absent myself from the situation, which is what I did. I deleted the email unread.

I’m exhausted.

© 2010 by Rachel Cohen-Rottenberg

20 comments

Still Plugging Away

April 15, 2010 Rachel Communication, Community, Disabilities, Sensory Processing Issues

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

12 comments

Embracing My Weirditude

April 7, 2010 Rachel Aging, Communication, Disabilities, Employment, Volunteer Work

In the past couple of months, I’ve been approved for services through the Vermont Division of Vocational Rehabilitation. I’ve been working with Will, my counselor, to put together an Individualized Plan for Employment (IPE). I was supposed to go for an intake inteview with another counselor today, but I’m sick with a sore throat and a cold, so I’m taking the rest of the week off to rest my very weary senses.

Working with Will has been a very positive experience. Will is Deaf, so we communicate by writing back and forth. He is very calm and moves very slowly, so my visual field doesn’t feel like it’s filled with lots of gestures and movement while we’re communicating. Going for an hour-long appointment isn’t tiring (when I’m well). I don’t have to talk, I don’t get overloaded, and (not surprisingly) I don’t feel anxious.

My main reason for beginning the Voc Rehab process was to find part-time work outside my home and feel like part of the world again. I didn’t want to work in an office, so Will gave me a vocational assessment test to see what else I might be suited to do. I finally chose to look for employment working with animals, either on a farm or in a shelter. I figured that working with animals would get me out of the house, keep me on my feet, give me something strenuous to do, and allow me to spend some time with sentient beings who don’t talk. I’ve got lots of experience working with dogs, cats, small mammals, chickens, goats, and sheep after living on a farm for six years, so I know what I’d be getting into. In other words, I’m not romanticizing the work.

However, I think I’m being little unrealistic about myself. As time has gone on, I’ve begun to wonder whether I could hold myself to a schedule of getting someplace outside my house at a regular time on a regular basis. I do get to the thrift store regularly, but that’s just two days a week for two hours a day, and it’s a volunteer position, so it’s flexible. They’re perfectly happy to have me repair quilts at home if that works better for me, so I have some good choices there.

But I worry about my ability to get to a paid job at a specific place, at a specific time, from week to week. I’m beginning to grasp that autism is a very inconsistent and unpredictable condition. Some weeks, I love being outside, taking walks, going to the store, and gardening. Other weeks, I just want to stay inside, all week. And some weeks, I’m somewhere in the middle. I used to think that I could pace things—go out one day, stay in two days—but I’ve found that there really isn’t a pattern that matches what my body actually needs. There are far too many variables affecting my senses to be able to predict how I’ll be doing from one day to another. For instance, I could take a long walk one day, and if no one were using power tools, or playing loud music, I’d come home in a far more relaxed state than if the sound of a buzz saw or a rock band found its way through my headphones. Or, if I went outside to garden and the road were relatively quiet, I would have a very different experience than if a lot of loud kids were outside in the street talking. And then there are the variables inside me: my level of energy, my mood, how sensitive I’m feeling, whether the internal abusers are awake, and so on.

Bob has been hinting that maybe, just maybe, looking for a job outside my house is not such a great idea. For a while, I kept thinking, “Gee, way to be supportive, honey!” but I finally got his point. I got his point, oddly enough, after I wrote my post about feeling like a freak. I realized that I was at an impasse. Do I try to hold myself to a schedule, and be conventional in some way? Or do I just embrace my weirditude and accept that some days, I’m like a billiard ball bouncing off the walls, and that some nights, I fall asleep in my clothes, and that often, I do not want to be interrupted from whatever fascinating thing it is that I’m doing?

The issue came up a second time as I began to consider the possibility of applying for disability benefits. Will said that the folks at Voc Rehab could help me with the application process if I wanted to go in that direction. He even said that, during the dreaded personal interview, the Social Security employee and I could communicate in writing, and that Will would be there for support. By no small coincidence, I also received my yearly Social Security statement around that time, which showed how much money I’d get if I were on disability: $1,890 per month. No small change. I worked a lot of years, and made a lot of money, and paid a lot into the system, and there is a part of me that thinks, “Hey, I deserve that money. I worked for it, and I burned myself out to get it!” But really, I find myself at the same impasse I’ve arrived at regarding work. Do I want to try to work with a conventional bureaucracy in a conventional way, or do I want to face the fact that I feel like I’m choking to death just thinking about it?

If money were an issue, I’d probably suck it up and go the disability route. But it’s not an issue. Bob and I are comfortable and our needs are pretty simple. So what do I want to do?

Answer: I want to work. A bit. At home. As a copy editor. For our local paper. Which is edited by a friend of mine. Who would be delighted to have me, if only as a volunteer. At first. I wouldn’t have to work at the computer. I could set my own hours. I could send in my copy with Bob. I’d be appreciated for the good work I do. And somehow, it would allow me to connect to an earlier time in my life, when I was working at home during my first marriage, when my daughter was small and we were homeschooling.

At that time, I felt like my world was so small; my marriage was falling apart, and I was feeling trapped. But really, when it came down to it, the kid, the homeschooling, and the job were all working great. In fact, it was great to work at home, because I could get up and take breaks whenever I wanted, I could start and end whenever I wanted, and I could wear whatever I wanted. Now, at a time when my daughter is getting ready to leave the nest, and I am going through a mid-life crisis to end all mid-life crises, it feels good and right to reach back and find something from my earlier life to bring along with me.

Will thinks that perhaps I could work at home and also work out in the community. He feels that with some training and accommodations, it may be possible for me to hold down a job outside my house. But he’s also willing to follow my lead here, and he can certainly try and help me find other work I can do from home. At this point, everything in me is saying, “Come on, Rachel. Just be eccentric, and inconsistent, and unconventional, and follow your own way. I mean, why stop now, when you’re getting so good at it?” :-)

© 2010 by Rachel Cohen-Rottenberg

6 comments

Contributing to the Local Community

March 3, 2010 Rachel Belonging, Communication, Community, Disabilities, Fiber Art, Making Art, Volunteer Work

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

6 comments

Autism and Self-Worth

February 21, 2010 Rachel Ableism, Belonging, Communication, Community, Disabilities, Loneliness, Marginalization, Spectrum Pride

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

15 comments

Okay, So I Really Am Disabled. Now What?

February 11, 2010 Rachel ASL, Communication, Depression, Diagnosis, Disabilities

Two weeks ago, I had an experience that was life-changing. It was so intense that I haven’t been able to write about it until now.

It was a Thursday afternoon, and I had spent two hours working at the nice, spacious, quiet new thrift store. I like working there, and the staff gives me good, tactile, straightforward things to do—like tagging items, stamping bags, pricing books, and so forth. Now that I’ve told them that I sew, they’ve been sending me home with quilts in need of repair, and I’ve been having a wonderful time bringing them back to life. For example, here are before and after photos of my latest quilt renovation project:


























So, anyway, back to the day in question. That day, I decided to wear only my earplugs to the store, and to take them out when I wanted to talk with people. For awhile there, the Zoloft seemed to be helping my sensory sensitivities and language processing issues, so I was feeling confident. Unfortunately, moderation is very hard for me. When my power switch is turned to “On,” it gets stuck, and it takes something rather harrowing to get it turned to “Off.” As a result, on this particular day, I had a 5-10 minute conversation with one person, and listened to another 5-10 minute conversation between two other people, and talked with my friend Tom (who has auditory sensitivities similar to mine, though not as severe). In other words, I was chatty.

Then I came home and felt like I was getting the flu. I mean, everything hurt. Everything. My joints. My muscles. My skin. My stomach. My head. I told Bob how I felt, and he thought I was getting the flu, but I knew it wasn’t the flu. It was the stress of talking, listening, translating, falling behind, talking, listening, translating, falling behind, talking, listening, translating, falling behind, over and over and over and over and over until I couldn’t think straight anymore. It’s as though the stress were radiating to every part of my body. I’ve felt so often over the past year as though I were getting the flu, but then I take a day or two to myself, and I feel better. So I finally figured out why I was getting sick.

Once my nervous system calmed down, I decided that I had to grasp the bull by the horns before it gored me to death, so I wrote the following email to the lovely managers and volunteer coordinator at the store (titled “Working Around My Disabilities”):

Hi all–

I plan to be working at the store this coming Wednesday and Thursday, and then to switch to Tuesdays and Thursdays in the following weeks. I will need to come in from noon-2pm (rather than 11 am -1 pm), because I’m needing my mornings for better self-care. Please let me know whether those hours will work for you.

When I come to the store, I’d like to communicate with written notes as much as possible. Don’t get me wrong—I absolutely love talking with all of you—but talking and listening are getting more and more difficult. Everything in me just wants to be “normal” and chat it up with everyone, but I overdid it last week and came home with muscle pain and body aches. My body seems relentlessly committed to reminding me that my autism and sensory processing issues are disabilities (even though I look pretty typical, even to myself) and that I need to take care.

See you on Wednesday…

Love,
Rachel

When I got back to the store the following week, I wore my earplugs and my headphones, and I knew that I could not remove them for any reason. The store managers were totally cool about it and communicated with me via notes. They love the work I’m doing on the quilts, they’re glad to have me at the store, and all is well with that part of the world.

Except, of course, that my last piece of denial is in shreds—the piece of denial that says, “Oh, come on. You can talk. You can listen. How hard can it be?” It’s hard. Unless it’s a one-to-one conversation with a close friend, a fellow Aspie, or a family member, it’s a non-starter. Completely. I know it. And knowing it makes me feel both incredibly relieved and very depressed.

The thing about being autistic and not finding out about it for 50 years is that I’ve had a lot of practice at looking around at all the things that interest me and thinking about how much fun they would be to do. Despite the fact that the world is quite overwhelming to my senses much of the time, I find the things that people do quite interesting. In fact, except for accounting and flipping burgers, there is very little in life that I don’t find interesting. I’d love to know how to cut people’s hair. I’d love to know how to repair a car engine. I’d like to know how to play soccer. I’d like to speak five different languages. I’d like to walk into a situation with people and talk to them. My brain looks at things and thinks, “That looks like fun.” And then I try to do them and find that they involve extended interactions with other people, and that’s all she wrote.

So, I now understand that I’ve got a serious disability going here, and I realize that I must tell people what I need without feeling ashamed or apologetic. I have no choice. I must advocate for myself and ask for the accommodations I need. With this reality in mind, I went to my appointment at VocRehab yesterday, and had a very good conversation (in writing and a bit of ASL) with my counselor Will, who is Deaf. I filled out a bunch of paperwork, and we discussed the kinds of jobs I might be interested in. I still have to have my application for VocRehab services approved, but I don’t think I’ll have any problem there. [UPDATE: I'm approved! In response to an email I sent asking how long the approval process would take, Will wrote, "You are eligible for VR services based on the medical information that I already got from you. Clients who are interested in work and have a documented disability/employment barrier qualify for our services."]

All in all, it was very helpful to be working with Will and seeing how comfortable he is with himself and how empowered he feels. It gave me a lot of strength. Plus, the office is so spacious and quiet, and the people there are so friendly, that I felt pretty good by the time I left (taking into account, of course, how tired I felt from interacting with people in general).

So, there you have it. I’m seeing the reality of my life more and more clearly, but I’m not seeing what lies ahead. It’s a hard place to be standing. I’m hoping that I can get a clearer sense of how to shape the next part of my life.

© 2010 by Rachel Cohen-Rottenberg

8 comments

As I Said to My Therapist…

February 7, 2010 Rachel Autism-Literate Therapists, Communication

A few weeks back, I had a conversation with my neuro-typical therapist about the mysteries of neuro-typical socializing. Specifically, I was talking about strategies that Bob and I had been discussing regarding how to handle running into (no, not literally) people we know. For instance, every time that Bob and I have gone to the movies and run into folks we know, they have always tended to utter, in tones of apparent warmth and sincerity, words along the following lines:

“How ARE you? It’s so wonderful to SEE you! We should get together some time! We really miss you guys so much. You guys are so great. Good to see you!” And every time such an event occurs, my poor little Aspie brain believes every single word, even though nothing ever comes of any of these words. Ever. Ever, ever, ever, ever, ever. I truly fear these moments, because my poor brain can’t help but take the words literally, which means my heart can’t help but feel all warm and fuzzy, which means that I get all hopeful and happy, which means that I just get fooled again.

So, having described the gauntlet I have to run between getting my popcorn and finding my seat in the movie theatre, I said to my therapist: “What’s up with this? Why do people say these things and then not follow through?”

And he answered, quite matter-of-factly, “Well, people are open and engaging when you run into them, and they say all of these words, and everyone in the situation knows that the words don’t mean anything.” To him, it was so simple. He didn’t seem bothered or perplexed by this social ritual in the least. In fact, he described the situation in the same tone you might use to describe how to start a car.

I just about jumped out of my chair at the absurdity of it all. For a moment, I forgot that he was the all-knowledgeable professional and I was the socially inept Aspie. (It happens. Often.) So, instead of pondering his words thoughtfully, I launched into the following mini-diatribe:

“How the HELL can you people live like this? Do you think you have an unlimited amount of TIME on this planet? Do you not realize that life is too SHORT to fill it by talking all sorts of GARBAGE that you don’t really MEAN? I’m sorry to have to say this, but I am SO not the one with the problem here.”

He took it very well—by which I mean that he maintained his integrity as a therapist and looked at me in a benign and accepting manner. And then he said, “Our time is just about up for today,” and he wished me an early good Shabbos as he ushered me out the door.

He really is a very nice person, my therapist. I just don’t understand how he thinks. And he doesn’t understand how I think. It’s pretty interesting to try to translate back and forth across the divide, though.

© 2010 by Rachel Cohen-Rottenberg

10 comments

Some Thoughts on Autism and Bullying

January 11, 2010 Rachel Aging, Bullying, Childhood, Communication, Spectrum Pride

In my last post, I discussed my commitment to move ahead with my life in the knowledge that I have no extended family. That reality is still very clear to me, and I got a very vivid reminder of it last night.

As you might have noticed, I have a rather large extended (former) family, with many, many cousins. At this moment, I’m turning my attention to a cousin I’ll call Boris. I haven’t seen Boris in 30 years or more. I never knew her well, but over time, a couple of people in the family made remarks to the effect that she might have been abused as a child. As cousin Ralph might point out, I have no way of knowing one way or the other. Boris herself has never said anything about it. If she did, I would believe her, but we’re never going to get anywhere close to that conversation.

Read on for details.

After I had scattered the ashes of my hope for an extended family, my conscience started to bother me about Boris. What if she were another survivor? What if she thinks she’s the only one? It didn’t feel right to simply go away without saying something to her, but what should I say? I stewed on it for awhile, and I finally realized that all I needed to do was to give her my contact information, in case she ever wanted to get in touch with me. (Please stop groaning.) So, I sent her a message that was as benign and as neutral as I could possibly make it:

“Hi, I’m your cousin…I now go by my Hebrew name of Rachel, and I’m married. If you ever want to contact me, you can reach me at rachel.vermont@comcast.net.

I hope that all is well with you.
Rachel”

I knew that the family lie had made it to the outermost reaches of my (former) family, so I knew it was entirely possible that the lie had made it to her door. I felt good in my heart for having done the ethical thing, and that was all that mattered to me. And so, I was prepared for her to ignore me, or to simply say “Fuck off.”

But no. Nothing is that easy in my (former) family. I’ll paraphrase Boris’ response. She said:

1. She doesn’t have a cousin anymore.
2. Her losing me as a cousin was my choice.
3. I have to live with my choice, so go to hell.
4. If I ever contacted her or any member of her family again, she would seek out a civil harassment restraining order.

I will never have to get all “Aspie-and-wordy” again to describe the toxic nature of my original family system. You have the whole family dynamic in a nutshell, right here: shunning, blaming, distortions, lack of compassion, and unprovoked threats. There it is. All on a platter, along with my head.

And why? Because I offered someone I barely know my email address and said I hoped she was well.

Okey dokey.

So, then I got to talking with Bob and with a good Aspie friend of mine about this latest turn of events, and I suddenly realized that I was being bullied. Moi, bullied? I thought. Moi, with a blue belt in karate? Moi, with 25 years of therapy under my belt? Moi, the mama bear who has been known to risk reputation and throw social graces to the wind on behalf of her (now nearly grown) little cub? Yes, I’m afraid so.

And then, I thought, wow, that’s exactly what happened with my parents and with my brother. They bullied me. My father bullied me with physical pain, with unwanted touch, and with threats of harm. My mother bullied me with lies, ridicule, and manipulation. My brother once pinned me to a car because I disagreed with something he said, and he shunned me when I broke contact with my parents. And then there was Uncle Sylvia, and our disastrous conversation of three years ago, in which he ridiculed me for asking for love and compassion over what I had suffered. And come to think of it, every single family member who has heard the lies about me and believed them has been bullying me with their silence and their rejection ever since. It’s absolutely amazing to finally realize it.

All this bullying, all directed at me. Innocent, good-hearted, clueless, Aspie me. But why? I have a few ideas. (Feel free to add your own).

1. I walk into every room thinking that people are all set to receive love, attention, and goodness from me. I just have to be clear and non-threatening, and we’ll all get along, right? What could be simpler? Ha ha. It’s not bad to want to be loving and attentive, but the expression “pearls before swine” keeps coming to mind.

2. I am very childlike. I have a kind of innocence that all the abuse in the world has never been able to take away from me. So, I figure that people feel powerful bullying an innocent person. Or something. I have no idea. It’s just a guess.

3. For much of my life, I tried so eagerly, so earnestly, and so innocently to figure out the rules and play by them that people began to see me as defenseless. And, as a kid, I was defenseless, just as any other kid. But for me, there was an extra element of defenselessness, because little autistic me could not understand lying, cruelty, social rules, and social hierarchies. I just kept trying to make sense of them and be everyone’s friend. That made me more than a little vulnerable.

4. Despite my once-unquenchable desire to figure out the rules, fit in, and be normal, I have always been the Achilles heel of the family. Why? I’m an Aspie. I speak the truth. I break illusions. As such, I am the person who is the ever-present reminder that the family ain’t nearly as perfect as everyone would like to pretend it is.

5. I am the person who left the bullies behind. A dysfunctional family system cannot tolerate people leaving just on account of they’d rather not be bullied.

So, I reach out to someone genetically related to me, on the off chance that she might need it, just to feel that I’ve done the right thing, and the whole family system comes roaring right at me.

God, I’m having a serious autism moment. The gig has been up for a long time, and I’m the last to know.

Comments and hugs both appreciated.

© 2010 by Rachel Cohen-Rottenberg

9 comments

Cycles of Return: Staying Out of the Victim Place

January 7, 2010 Rachel Childhood, Communication, Spiritual Beliefs

On more than one occasion, friends and loved ones have shared with me the following definition of insanity:

Insanity is the process of doing the same thing, over and over, while hoping for a different result.

Personally, I think that’s a fine definition of insanity, so I’ve been looking at my recent debacle with my cousin Ralph and trying to decide whether my behavior meets the criteria. Certainly, after countless disastrous interactions with my original family members, my willingness to toddle over to my father’s side of the gene pool, hoping for a civil and productive conversation, might seem a little, well, nuts. But was it?

I don’t think so. I’ve begun looking at the disaster with cousin Ralph in a more spiritual way, using the Jewish idea of teshuva, which means “return.” Generally, we talk about doing teshuva when we’ve done something wrong; we acknowledge the wrong, we make amends, and we pledge not to repeat the mistake when the same situation arises again. If we can do those things, then we have returned, both to our original pure selves and to a state of harmony with others.

So I’ve been thinking: Why was I creating another cycle of return to the same place with my original family? What had I done wrong before, and what was I trying to do right in this interaction with Ralph?

My last less-than-ideal contact with a family member had taken place about three years ago. I contacted my uncle Sylvia (not his real name), hoping to reconnect. I was unsure of how or when to bring up the abuse, but I figured I’d find an appropriate moment. Unfortunately, as soon as Sylvia got my first email, he did an Internet search on my name and found a post I’d written about being an abuse survivor. As a result, the proverbial shit had hit the proverbial fan before we’d even begun.

At first, Sylvia questioned the idea that my parents could ever, ever have abused me, but a short time later told me that I had taken revenge on them by breaking contact. Revenge for what? I asked. For stuff that didn’t happen? No matter how many times I told him that I was interested only in my own survival, and that revenge had never been part of the equation, he couldn’t hear it. With each iteration, he got nastier. By the end, I pretty much broke down in a mass of tears and self-hatred, waved a white flag, and ended the interaction feeling like a victim. Again.

This time around, with cousin Ralph, a similar dynamic occurred, although to her credit, cousin Ralph did not get nasty with me in the way that uncle Sylvia had. However, the same mind-boggling question-the-abuse/acknowledge-the-abuse contradiction was there, expressed in emails containing such statements as “I have no basis on which to believe you” and “I had no idea you came from such a dysfunctional family.”

Excuse me for a moment while my head stops spinning.

There was also quite a bit of, shall we say, lying regarding the family photos. In one of her first emails, cousin Ralph had said that she had “many more” photos to send after the initial batch. In one of her last emails, however, she said that she’d just “scoured” the family albums and, well, gosh darn it, she just couldn’t find any more photos. Sorry! So sorry!

I hate it when people lie. I’d rather they just said, “Get the fuck out of my face.” That I could understand. Lying perplexes me. My Aspie brain just can’t quite believe that it’s happening. Why lie when you can just come out and say something? (That was a rhetorical question.)

Anyway, at some point in the interaction with cousin Ralph, I finally realized that I had to give up on having an extended family. I mean, I really, really had to give it up. And so, my friends, I must inform you that, during the past week, I made the difficult decision to remove from life support my brain-dead hope of ever having an extended family of people who share my DNA. (Services were private; in lieu of flowers, please make a donation to the charity of your choice.) After the cremation and scattering of the ashes, I was feeling very sad, so Bob wrote me the following beautiful email while he was in New York:

Hi love — Thinking more about Ralph’s e-mail, it seems to me that your decision to move on with your life as if there is no family is the right one. No matter what Ralph may or may not be willing to do in terms of a potential relationship with you, her email is simply another “missed opportunity” for people in your family to reach out to you in a loving, compassionate, understanding way. Whatever her reasons were for responding in the limited way that she did are her reasons, and have little if nothing to do with you. And hasn’t this been the problem all along? That no one has considered how you must feel about any and all of this?

And to me, that’s the real tragedy, and the source of the sadness I’ve been feeling lately about the absence of real family in your life. It underscores what you’ve been saying for all these years — that you’re a good person, that you’ve done nothing wrong, and that you deserve better from your family.

Sad to say, those are all good reasons to say goodbye to them. To close the door and move on down the road. The line from a Mary Black song goes something like, “We’ll never see what lies ahead if we’re always looking back.”

As I re-read these words last night, it came to me: I must end the interaction with Ralph with dignity. I cannot end it feeling powerless and screwed over. If I do, I’m just a victim again, just as I was in my interaction with uncle Sylvia, and just as I was in childhood. I must stay out of the victim place.

Sometimes, that’s hard for Aspies, because the world can feel like such a hurtful and incomprehensible place. But I can’t be a victim in this world. My innocence, my trustworthiness, and my truth-telling are some of my best qualities, and just because people occasionally take advantage of them doesn’t mean that there’s something wrong with me. So, with all these thoughts in mind, I gathered myself together and wrote the following email:

Dear Ralph,

A few days ago, I wrote that if you believed what I said about my childhood, you should write to me, but that if you didn’t, you should continue your silence. When you responded by saying that you didn’t have any basis for believing me or not, I should have stopped our communication right there.

I don’t have any physical evidence that proves anything I say, so if evidence is what you need, I’m afraid I can’t offer any. I have no medical records or reliable witnesses, no police reports or other testimony. All I have is my own truth, my own integrity, and an abundance of other people who believe me. Some of these people have never met me in person, and some haven’t seen me in over 30 years, and yet, they still believe me, and they still express compassion and support for me. And why not? What do they have to lose? Nothing. Absolutely nothing.

That’s what I need in my life. That’s what I’ve been trying to say.

Let’s end our communication here and wish each other well.

All the best,
Rachel

Now to me, that’s teshuva. I’ve gone through another cycle of the family craziness, and this time, I’ve come out sane. I’ve returned to my true self—not a victim, and not even a survivor, but simply a whole, decent, self-respecting human being.

© 2010 by Rachel Cohen-Rottenberg

10 comments
« Older Entries   Recent Entries »