Archive for February 25, 2010

And Now, A Word From My Daughter

February 25, 2010 Rachel Education, Parenting, Spectrum Pride

My daughter Ashlynne is a junior in high school. For her journalism class, she keeps a blog about events and issues of interest to her. After seeing autism in the news recently, she decided to write about the most recent and infamous Autism Speaks video. She sent me the link to her post and gave me permission to mention it on my blog. If you’d like to read her piece, you can find it here.

It’s very heartening to know that my daughter sees the issues so clearly and that she is sharing her knowledge with her peers. Way to go, Ashlynne!

© 2010 by Rachel Cohen-Rottenberg

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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

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More Thoughts on Labels and How to Use Them

February 16, 2010 Rachel Diagnosis, Spectrum Pride

I’ve been very gratified by how excited and supportive people have been about the new name for my blog and my reasons for choosing it. Apparently, a number of others feel as I do about wanting to distance themselves from anyone using the Asperger’s label in an elitist way.

For me, dropping the Asperger’s label is the right decision. It’s been a long time coming, and I feel liberated by letting go of the pretense that I am anything other than autistic. But the process of coming to terms with who we are, especially for those of us who discover that we are autistic in mid-life, is complex and personal. I would never judge the process of a fellow autistic who is trying to carve out his or her path. For many autistic people, the word Aspie feels absolutely right, and I would never want to take that good feeling away. So, I want to be very clear: I don’t have an issue with anyone who self-identifies as an Aspie or uses the Asperger’s label, so long as the person is not being elitist, divisive, or dismissive of anyone on the spectrum. If someone self-identifies as an Aspie, and wants to be called an Aspie, I will respect that choice.

Remember: The DSM criteria do not even come close to describing the experience of being autistic. Not even close. Not even in the ballpark. Not even in the same country. And I’m talking about the criteria proposed for the DSM-V as well as those already in the DSM-IV. They are so far off the track, it’s ridiculous.

So I don’t want to put too much energy into arguing over labels. I want to do what I’ve always done with this blog: to talk about the experience of autism from the inside, to give and receive support, and to discuss the joys, challenges, difficulties, and gifts that come with being autistic.

© 2010 by Rachel Cohen-Rottenberg

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Why I’ve Changed the Name of My Blog

February 13, 2010 Rachel Administrative, Belonging, Marginalization, Spectrum Pride

I’m tired of the Asperger’s label.

I’m tired of people using it to distance themselves from other autistic people.

I’m tired of the folks who imply that having Asperger’s makes being autistic okay, but that being autistic is somehow not okay.

I’m tired of being put into some sort of nonsensical order in which Aspies rate higher than other autistics.

I’m tired of division.

I’m tired of hierarchy.

Bev’s latest post says it all for me. And by changing the name of her blog, she’s inspired me to do the same.

At some point, I hope to change my domain name as well. I haven’t figured out the mechanics of using a new domain name and making sure you all can find me there, but when I do, I’ll make the change.

UPDATE: If you’ve found the new URL, you’ll see that I’ve changed my domain name. I’ve specified the proper settings to redirect people automatically from aspergerjourneys.com, but it may take up to 72 hours for the settings to take effect. Argh. Meanwhile, I’ll need to go through and repost all my photos again, since they’re attached to my old domain name.

Note that I also have a new email address: rachel@journeyswithautism.com.

© 2010 by Rachel Cohen-Rottenberg

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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

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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

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