Archive for Anxiety

Dreams

July 10, 2009 Rachel Anxiety, Belonging, Childhood, Community, Friendship, Grieving, Loneliness, Sensory Processing Issues

Dreams

Hold fast to dreams
For if dreams die
Life is a broken-winged bird
That cannot fly.

Hold fast to dreams
For when dreams go
Life is a barren field
Frozen with snow.

                –Langston Hughes

Thank you to everyone for your love and support after my last post. Every word means so much to me.

Not surprisingly, I’ve just come out of another bout of grief and tears this morning, feeling the impact of so many dreams that have died. Certainly, some of my dreams have come true, and my grief in no way diminishes my gratitude. But right now, the grief is hitting me like a tsunami. Every day is a constant process of letting go of dreams that have propelled me all my life. I thought I’d let go of all the big ones, but I’m still hanging on, and I have to stop. Hanging on just brings me heartache.

I’m going to write about the dreams I’ve come up against today. Writing helps me feel like I have some control over what’s going on, but please don’t take this piece as any kind of indication that everything in my mind feels orderly and precise. At the moment, I’m feeling about as burned out and confused as I’ve ever felt in my life.

Where Did the Past Go?
This morning, I was sitting in the kitchen window, looking out at the orange lilies in the next-door neighbor’s yard. The light was dappled by the chestnut tree, and the shaded yard nearly had a feeling of autumn about it. But it’s not autumn, and what I was seeing was a memory from when I was a child. The only flowers we had were the same type of orange lilies; they grew by the side of our house. I had a very strong sense memory of being a little kid, living in that house, running around with my brother, feeling like everything was okay. Of course, most of the time, I didn’t feel like it was okay. Most of the time, I was anxious and fearful. But on a Saturday morning in summer, when all we had to do was go down to the drugstore, buy baseball cards and candy, and spend the rest of the day playing baseball, or wandering in the woods, or pretending to be Batman and Robin, life felt like it ought to feel—happy, hopeful, innocent.

My dream was that it would stay that way, and that my brother and I would always be close, but of course, that didn’t happen. My parents are gone, and my brother is lost to me. For the sake of his privacy, I won’t go into details, but suffice it to say that he is not someone I want to know anymore (and he appears to feel the same way about me). How we started out being innocent and happy, and ended up where we are now, is hard to explain. I could tell you everything that happened, but it would never be the whole story, because the whole story is not a collection of events, but the complex working out of pain, fear, love, anger, and confusion. It feels like my original family got put into a centrifuge, and each of us got spun out in different directions, never to return. It’s overwhelming for me, and unbearably sad. I want those days back. I want that dream back. I want to make it all work out just fine. But it’s all over. I can’t change any of it.

I’m Not Who I Was Supposed to Be
I was reading an article today on the Internet, and I noticed that the author was the daughter of my childhood piano teacher. Her name stood out to me because of a particularly sweet childhood memory. One day, while I was at my piano lesson, playing a piece that I was going to perform in Boston, the author and her sister, ages 2 and 4, were standing on either side of the piano bench, jumping up and down, screaming their heads off. When I was done with the piece, my piano teacher said, “If you can play a sonata through THAT, you can play it anywhere!”

So, today, I did a little bit of searching about what this woman has been doing with her life, and it turned out that before writing a well-reviewed book, she had been a producer for Dateline NBC. That’s when another level of grief hit. You see, I was a really smart kid. I mean, really smart. I taught myself to read. I got all As in school. I nearly aced every SAT and college board I took. I was gifted in music. I won a statewide piano contest. I got into an Ivy League university. I was supposed to be successful. I was supposed to be a producer, a director, a musician, a lawyer, a doctor or Anything Other Than What I Am. That was the dream, and it guided my entire childhood and adolescence. Now, I look at people who couldn’t do what I did when I was just a kid, and I see that there is no way I could ever do what they’ve done as adults.

Every now and then, I torture myself by going online and searching for the names of people from high school, just to see what they’re doing. It’s unbelievable what people are doing. They’re out in the world being important and successful. I keep asking the question: How can people have surpassed me like this? I never expected to be famous, but I once was full of promise. Could I have ever worked at the jobs they have? No way. I know it. And yet, I can’t quite grasp why not. I know that raw intelligence isn’t everything. I know that I don’t understand (or respect) social politics. I know that I get overloaded in groups of more than two people (and sometimes even that’s a stretch). I know all these things, but I still can’t quite accept what’s happened. The gulf between who I was supposed to be and who I am is so deep and so wide that my mind can’t take it in and make any sense of it.

It’s like looking at someone who has died. How can the person be alive one moment and gone the next? The mind can’t go there. You want to say to the person, “Just wake up.” You want to see where the person has gone off to. But you can’t. And that’s what’s happening to me. I still see myself as that person with the dream of doing Whatever She Wants, but I’m not that person. That person is gone. Where did she go, and when? At this point, I’m so sensitive to everything, I can barely go outside my door. 

What Could Be More Important than the Approval of Others?
When I was in high school, I was determined to be one of the cool kids. Of course, I failed miserably, but what did that matter? There were other kids I could have hung out with—the ones everyone made fun of because they were shy and awkward and carried slide rules and pocket protectors. I liked them just fine, but I saw what they had to put up with. I saw the cruel things that people wrote in their yearbooks. I saw how people laughed at them every day. I saw that they were perpetual outsiders, and I fled from them because I wanted to be an insider.

So, as I got older, I straightened my hair, lost weight, wore conventional clothes, and tried to become acceptable. I’ve never stopped. I’ve been trying and trying and trying to be one of the cool people. I have a million faces, and I have a million clever things to say, all in the service of not wanting to be laughed at and rejected.

I cannot be weird. I cannot be an outsider. I cannot be looked upon as an oddity or a freak. I must be like everyone else. Those were my prime directives in life, and I once dreamt that I could fulfill them.

Guess what? Game over. Bye bye to that dream. See ya. Nice knowin’ ya. And no, you can’t ever come back.

You Mean You Don’t Want My Energy for Free?
When my daughter first started school, she was in the eighth grade, and I offered to volunteer at her school as a tutor. It’s a small school, and all the teachers wear many hats, but they didn’t want or need my help. Of course, they didn’t say it outright. They said, “That’s a sweet offer” and then proceeded to ignore me. Who knows why? Am I too smart? Too direct? Too weird? I don’t know. Once the homeschooling was done, I was hoping to use my skills as a teacher, and I was offering them for free. But no one ever took me up on it.

At this point, I wouldn’t be able to help out at the school because of my sensory issues, but it still hurts that I never got the chance.

Seeking My Fellow Aspies and Auties
Okay, now that you’ve come this far, let me get to the latest and greatest dream-that-must-die. Remember the school for autistic young people, where the person was so excited to get my offer of serving as a volunteer? Where she said that they were completely open to my needs around sensory issues? Remember that? Sounded good, didn’t it?

The last email I sent them was on June 24, suggesting that we get together on June 30. That was over two weeks ago, and I haven’t heard a word—not even to say, “I’m sorry, June 30th won’t work, but how about some time in July?”

Now, I tried really, really, REALLY hard to not get my hopes up about this school, because things just generally have a pattern of not working out in rather mysterious and inexplicable ways. But, the truth is, I had my hopes up, big time. It wasn’t just about having something to do. It was about being around autistic people. Since then, I have found another Aspie in town, and we are emailing, but other than that, I have no local contact with anyone autistic. There are groups in Northampton and Amherst and Keene and Springfield, but I don’t live in any of those places, and I can’t possibly drive there and expect to have any energy left when I actually arrive.

So yeah, okay, I had my heart set on being at the school. I could walk there and be among some autistic people. Oh well.

I keep wondering what I’ve done wrong, and why people don’t want my energy when I’m willing to give it for free. Am I too direct? I’ve only spent 25 years and a gazillion dollars in therapy being told to be who I am and to ask for what I need. So I do, as clearly and as authentically as possible, and voila! I still get left by the side of the road. I’m a perpetual outcast. It’s really unbelievable. It would be okay if I loathed people and wanted nothing to do with them, but I love people and I want to help them. I just keep hitting the big brick wall that everyone else seems to see but me.

I just don’t understand. I try to be NT: no dice. I try to be myself: no dice. I try to be direct: no dice. I try to be gently patient and encouraging: no dice. I try to be super-competent: no dice. I try to acknowledge my challenges: no dice.

I would really like to get together with my new Aspie friend in town, but to tell you the truth, I’m scared. It seems like everything I touch in the outside world magically screws up. I keep thinking that there would be no social pressure with another Aspie. I keep thinking about how relieved I would feel to actually meet her in person. But I’d probably just cry for much of our first meeting, and whoops! another person gone.

So it’s hard to dream about anything that concerns other people. And I don’t want to be alone. So my life feels pretty awful right now.

Bob keeps saying that I just have to keep letting go of the dreams that don’t work so that other dreams can take their place. But I’m not sure I can bear any other dreams. They break my heart. If I could understand why things don’t work out, maybe I could change what I’m doing, but I don’t understand it at all.

© 2009 by Rachel Cohen-Rottenberg

15 comments

At a Low Point

July 9, 2009 Rachel Aging, Anxiety, Belonging, Community, Diagnosis, Loneliness, Marriage, Stimming

When I first got my Asperger’s diagnosis, I was so relieved. I was able to look back over the course of my life, from the distant past to recent events, and see the common thread linking everything. For awhile, it felt great. I love when things make sense, and the Asperger’s diagnosis made beautiful and astonishing sense.

Then, after a month or so, I got done walking on air and began feeling a lot of grief for the things I couldn’t change, for the person I couldn’t become, and for the end of believing that I could do anything I wanted to do. Since that time, I’ve been in a sort of holding pattern, and I’ve felt like I was doing okay. But now, I feel like the bottom is falling out.

On the outside, nothing has changed. I am physically healthy, my marriage is great, my kid is happy, I can write no matter how fried my head feels, and anyone looking in from the outside would probably assume that I’m doing just fine. The problem is, because I don’t go out much anymore, very few people can actually see me from the outside. I’m feeling an absolute aversion to going out into the world. Some days, I can take walks on quiet streets, so long as I’m a) wearing my Sonic Defender earplugs, b) wearing sunglasses, and c) keeping my eyes fixed on the ground whenever I see a person anywhere near me. I have to control what I look at and what I listen to, as much as I can. But most days, I don’t want to go anywhere.

One by one, I’m watching all the dreams I had for my life fall away. The funny thing is, I thought I’d already let go of so many. What could be left? I just had a few small dreams I was holding onto—going to the movies with my husband, having dinner out, getting dressed up and working at the store. Last year at this time, Bob and I went to the movies on Saturday nights, and I loved getting dressed up for work. I was even hoping to find a part-time job. But now, just a year later, even those small things are gone. I look at all the clothes that I bought last summer at the store, and I want to cry. They belong to an era in which I naively thought I’d be a strong, confident part of the world. That era seems very far away.

It seems like anything I want to do “out there” isn’t possible. Even the people from the school for autistic kids haven’t gotten back in touch with me, and it’s been over two weeks. Maybe they read my blog and decided they didn’t like me? Or maybe, I’m just supposed to let go of the world “out there” and stand face to face with the unmistakeably autistic person I am.

I have very little energy for NT emulation. I know how much it burns me out. I go into the world and put on my face, get overwhelmed and anxious, and come home unable to locate myself. Somewhere between being housebound and being in the world, there’s a huge rift and I fall in. Every time.

I love the natural world, and I love people, and I find the things that people do very interesting, and sometimes very beautiful. But it’s all overwhelming to my senses. When I go into the world, and I take in all the sense impressions and emotional energy, I end up feeling like I’ve been hit by a train.

It used to be that I was just afraid of people with bad energy, but I can see those types coming from a mile away. It’s not hard for me to spot them, and it’s not hard for me to walk away from them. It’s the really friendly people that give me the difficulty now. I want to be around them, I want to talk with them, and I want to be one of them, and yet, I simply can’t. I went to the thrift store with Bob last week, just to see how it felt. Everyone was so welcoming and so glad to see me, and I loved seeing them, too. But after a half hour of being in the store, I was disoriented and exhausted. It took me most of the next two days to recover.

Then, on Sunday, I had an emotional blow-out, and spent much of the day crying over feeling so isolated and alone. On Monday, Bob left for New York for a couple of days, and I was still crying. On Tuesday, I stayed in all day. By Wednesday, I was sitting at the breakfast table, handflapping and rocking. In the past, when I’d get overloaded, I’d have to think about what to do—lie under my weighted blankets, work out, sing, do some hard work. Now, I’m just stimming, early and often.

From the point of view of the autistic person I am, this kind of stimming is progress. In fact, I love it. It feels natural. It feels like some sort of ancient healing ritual. It feels like I’ve lived my whole life unable to speak my native language, and now I can.

But from the point of view of the highly accomplished and assertive person I used to be, it feels like I’ve been the hapless victim of a major fraud. How can I possibly have lived on this planet for 50 years without knowing that I’m autistic? I can see living here for one year, or two years, or even ten years without anybody noticing, but 50 years? How is it that even possible? Why did I have to burn out before the truth revealed itself? And now that I know, what’s going to become of me?

It’s really hitting me hard that there is no going back. I cannot fool myself into thinking that if I get dressed up, go out, and work at the store that somehow, I’m approaching the vicinity of the Land of Normal, where everything will be okay. When Bob is here, I do all right, because he’s easy to be with and he loves me. When my daughter is here, all the better, because I love seeing her and hearing the things she shares about her life. But when I’m alone, without either of them, my level of fear goes off the charts. I think, what if I were left completely alone? What if this were the next 20, or 30, or 40 years of my life? It’s not the food shopping and the driving that worries me. It’s the being alone. Forever.

I know that everyone has these kinds of fears. But neuro-typical people have many more opportunities to go out and get a break from the aloneness. I don’t have those opportunities. I can’t make plans and hope that they’ll work, because I keep trying to make ever more humble and sensible plans, and they still don’t work.

Right now, I am so totalled by all these realizations that Bob is coming very close to canceling his trip to California in August. My daughter will be at camp during the time that he would be away, and the idea of a week and a half at home alone feels impossible. I used to handle his extended trips by making plans with friends, but it didn’t really help. In fact, in some ways, I felt more isolated. I loved seeing my friends, but when I came home, I’d feel twice as alone as I had before. Even Bob’s short trips to New York are terribly difficult.

So I’m in a major crisis. It’s not a life-threatening crisis, but it’s a crisis nonetheless. I want Bob to stay here as much as possible. I don’t have a problem with his going to New York to see his dad, because his dad needs him and they need to be together. Even thought it’s difficult, I can support it. But I also need a lot of support for myself right now, and while I’m still trying to find ways to get the support outside of my house, I need Bob to be nearby. If his daughter wants to see him in August, perhaps she can come east and they can hang out in the house she grew up in. Bob feels like that might be a good solution. He’s not ready to make a final decision at the moment, but I think that’s where it’s going.

For my part, I’m starting to make some contact with a couple of local agencies that work with developmentally disabled people. It’s useless to pretend I have it all together when the whole damned facade is crumbling. I hope I can find some support locally and feel less alone in my everyday life.

You are all an amazing lifeline.

© 2009 by Rachel Cohen-Rottenberg

13 comments

Why I Can’t Do What I Used to Do

June 29, 2009 Rachel Aging, Anxiety, Diagnosis, Marriage, Spectrum Pride

This morning, I ran across another amazing piece by the brilliant Amanda Baggs called Help! I Seem to be Getting More Autistic! It’s a long, informative piece about all the possible reasons that we can lose abilities as we get older. The section called Burnout especially spoke to me, setting off a cascade of feelings and associations that helped me understand why I can’t do many of the tasks and activities I once did.

Amanda explains that burnout begins because we are working at a level of energy that non-autistic people would use only in emergencies:

“Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

Until my diagnosis, I’d been functioning at emergency level for 50 years. Amazing, isn’t it? I should get a plaque, or a trophy, or maybe even a write-up in the local paper. Can you see the headline?

LOCAL AUTISTIC WOMAN BURNS OUT AFTER 50 YEARS OF EMERGENCY FUNCTIONING
“So THAT’s why she’s so quiet,” says neighbor

In the article, I would explain why my short trip to the hardware store this afternoon was followed by several hours alone in my loft, writing my little heart out. After all, if you had to walk five entire minutes to the hardware store, buy four sponges, a spray bottle, super glue, and some scotch tape, and then walk five more minutes back, you’d be exhausted, too. If you were me. Or anyone else who has tried to be “normal” for as long as I have.

But back to Amanda’s piece. In the same section, she sums up, well, pretty much my whole life to this point:

“The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.”

Given all the plates I’ve kept spinning in my lifelong quest to be neuro-typical, having a simple choice between 1) being conspicuously autistic or 2) dying—well, it’s one hell of a relief, let me tell you. I’ll take the conspicuously autistic woman behind door number 1, please. Why has no one told me about her before? She’s quite wonderful!

The problem, of course, is how do you get support services when you’ve made a seemingly phenomenal success of life? Amanda writes:

“Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.”

This problem is why I have decided not to apply for disability. I don’t think that anyone at the Social Security office could begin to understand what a difficult time I’ve having. I can’t blame them, because I’m just beginning to understand what a difficult time I’m having. Fortunately, I have Bob and his family to help me, so I don’t have my back up against the same financial wall that so many others do.

After I read through Amanda’s piece, I went downstairs to the kitchen, and I told my husband that I feel even more adamant about getting people to help with basic tasks. We’ve hired a housecleaner who is starting this Friday (yay!), but we need to continue reconfiguring our lives to deal with the reality that 1) I’m autistic and 2) he will be able to do less for me, not more, as he gets older.

From the time I was first diagnosed, my husband has used a great image to describe what has happened to my life. He said that I’m like the Road Runner in the old cartoon. The Road Runner would run right off a cliff and be perfectly fine—until he looked down. Then, he’d crash. Every time I say to Bob, “What has happened to my life? Why was I able to do so much more before?” he gives me the same answer: “You looked down.”

I looked down and saw that I’d been running off a cliff for some time. I just didn’t know it. By trying to take care of everything myself and not asking for any help, I was working way past my capacity. When I got my diagnosis, it was like finding myself in mid-air. I had to face the inescapable reality that gravity was going to win.

As Bob and I talked about the image of falling, I suddenly understood the source of my worst nightmares. Since childhood, I have had two related, recurring dreams.

In one version, I am on the ground watching a plane or a bus or a car, with people in it, zigzagging across the sky. The vehicle is out of control, and I know it’s going to crash, with all those people in it. I am terrified for the people who are going to die, and as the vehicle starts plunging to earth, I know that if I don’t wake up, I will also die. I am always able to wake up just before the vehicle hits the ground.

In the other (and even more terrifying) version, I have climbed to the top of a very high place using several ladders or flights of stairs. The problem is that the ladders or the stairs are on the outside of the structure, and I suddenly realize, to my unspeakable horror, that I cannot get down. Going back down the ladders or the stairs is out of the question. I am very high up, the stairs or the ladders are nearly perpendicular to the ground, and the sight of the earth below is dizzying. I know that if I try to get back down, I will fall and die. There is no way to get down gracefully. I stand there wondering how I could possibly have climbed all the way up without realizing that I wouldn’t be able to get back down. And then, I’m so scared that I wake myself up.

Both kinds of dreams are about an autistic person trying desperately to be a super-competent neuro-typical person. All my life, I had climbed the ladder of success, and I’d spent my life convincing people that I had it all together. And all that time, behind the scenes, I was terrified. In fact, I can barely remember a moment of my earlier life in which I wasn’t anxious or afraid about something. Now I know why. 

I was always afraid of falling off the ladder of success. I was always afraid of a “fall from grace.” I was always afraid that someday, I wouldn’t be able to “do it all” anymore. I was afraid that someday, I’d have to be who I really am.

That’s a fall from grace? What a laugh! Everyone should be so lucky. It’s been more like a fall into grace. Here I’ve fallen from this high ladder I climbed, and look where I’ve landed: I have a husband who loves me as I am, a kid who loves me as I am, friends who love me as I am, an online community that gives me a phenomenal amount of support and understanding, and a local community in which I feel safe coming out as an autistic person. So what’s not to like?

Sometimes, I wonder: If there had been an Asperger’s diagnosis when I was younger, would I rather have been diagnosed at 5, or 12, or 18 years of age than at 50? After all, I would have had many more supports and a much more realistic view of myself. But each time I ask the question, the answer is no. If I’d been diagnosed earlier, I wouldn’t be where I am right now. I can’t regret the past, because it’s brought all the people I love into my life.

Tomorrow, my husband is going with me to the thrift store. We’re going to walk around, watch how I’m feeling, and consider how I might make a place for myself there. When I told my husband that I was going to the shop tomorrow, just to get a feel for the place again, I didn’t even have to ask him to come with me. He just knew I needed him to be there.

While my life has not been the easiest life, it hasn’t been the hardest, either. In fact, it’s become a very interesting adventure. I hope it continues so.

© 2009 by Rachel Cohen-Rottenberg

12 comments

On Being True to Myself

June 26, 2009 Rachel Anxiety, Belonging, Communication, Community, Spectrum Pride

Once again, I’ve come around to the issue of how to be true to myself.

For most of my life, I’ve made a practice of emulating other people in order to know how to navigate. I’ve been so single-mindedly focused on getting it “right” that when things go “wrong,” I feel like I’ve messed up. But, in truth, I don’t mess up any more than anyone else on the planet. So why does it feel that way?

The feeling derives from an old, false belief that something is amiss inside me. Of course, when I’m thinking clearly, I know that nothing is amiss at all. I’m autistic. That’s neither good nor bad. It just is.

But I still feel divided, in a couple of ways.

1) I am firmly grasping myself by the hand and bringing myself out into the open, while at the same time, my old conditioning is kicking in and saying, “You’re doing WHAT? Hide that person!”

Now that I’ve peeled off the masks, I can see how my life experience has taken its toll on my self-esteem. All the times that I’ve been bullied, rejected, laughed at, or shunned have made their mark. And yet, miraculously, I can see that there is nothing wrong with me. When people have been cruel, it was all about them and their blindness. That’s all. So I hear the old conditioning that tells me to hide, and I say, “Well, I’ve taken your advice for half a century, and thanks for trying to help, but it’s time for you to retire.”

2) Who exactly am I, anyway? Exactly where is the line between being my wonderful, loving autistic self and pretending to be someone I’m not? Where is the line between holding onto my power and letting it slip away?

After all, I have social skills and I feel fine using them. The problem arises when I use them and pay absolutely no attention to the voice of my neurology ringing me up and saying:

Hello? Yes, I know you have social skills, but I’m getting tired…Yes, yes…of course…I know being at the store is fun…Yes, I know, but it’s been a couple of hours, and I really need to go home.

If I tune into my neurology and give it the respect it deserves, I’ll know when I’m in danger of crossing over from enjoying myself to driving myself. The problem is, how much is too much? Do I leave at the first warning sign of overload, or do I push myself a little further? I’m not sure. The answer to these questions is still a work in progress.

I feel as though I have a foot in each world—the ASD world and the neuro-typical world. I’ve got neurological wiring that makes me autistic, and I have autistic friends I’ve made online, but I also have relationships with people who are neuro-typical, and I value those relationships. I have to be able to navigate between the two. Doing only one or the other is out of the question. But how?

I’m not sure. I certainly can’t keep going with the image of having a foot in each world.  It makes me feel like I’m nowhere. But I’ve been meditating on another image, an image of threading myself through the outside world while being aware of what’s going on inside me. Sometimes, that inner self will be communicating with other autistic people, which generally feels easy to me. And sometimes, that inner self will be communicating with neuro-typical people. At times, I find it very easy to talk with neuro-typical folks, and sometimes, I find it immensely difficult. It all depends upon the person, the nature of the environment, and the state of my sensory system at any given time.

What’s most difficult is the knowledge that I have to be prepared for other people’s fears and misconceptions. If “coming out” didn’t mean running up against everything from complete acceptance to out-and-out ignorance, it wouldn’t be so difficult. The one thing I badly need to avoid is talking to people endlessly, hoping that if I throw enough words at them, they’ll understand. I don’t have that kind of energy anymore.

As far as I can see, if I want to throw a little light on the subject of autism, I have two options: I can write, and I can be true to myself. I think I’ve got the writing part down. Now I can get on with the task of being true to who I am.

© 2009 by Rachel Cohen-Rottenberg

5 comments

Still in a Holding Pattern: Update

June 25, 2009 Rachel Anxiety, Belonging, Communication, Community, Happiness, Volunteer Work

ORIGINAL POST: I’m feeling very stuck. After more than a week, I still have not heard from anyone at the store. Bob is going to stop by there today to politely inquire and perhaps gently mention that a response would help me a lot right now.

It’s not just about whether I’ll be able to keep volunteering at the store. Who knows how that will work out? Right now, it’s about the fact that I feel too uncomfortable to go to the store, just to shop or look around, because I don’t know what’s going on. Have both people I emailed been on vacation for the past week? Are they angry that I sent them an email rather than making a time to sit down and talk with them? Are they scared off by the word autism?

I don’t know. And when I don’t know what’s going on, I don’t know what to expect. And when I don’t know what to expect, I won’t walk into a situation at all. I find it so overwhelming to walk into something I don’t understand that I just stay away. If I knew where people were in their process there, I’d feel better. But I have no information.

At this point, I don’t even go near the store, because I don’t want to run into anyone who works there. It would feel too uncomfortable. What if I see someone, and they ask me where I’ve been? Or if I’m coming back soon? How will I know what to say? And even if I think of something non-committal, the interaction will still feel painful and awkward.

So I’m staying pretty close to home much of the time.

About the school for autistic young people, I am feeling more optimistic. I took my friend Sue’s advice and sent an email asking to break up my visit into smaller, more manageable portions. Here’s what I sent last night:

Hi Stephanie,

Welcome back, and thanks for your message.

The best way for me to proceed is to do things one at a time. So, perhaps one day, I could come in and meet with you to talk over what your needs are and how I can help. Then, another day, I could meet with Carol, or observe one of your summer programs. If I try to do too much in one day, I’ll get overloaded.

In general, one-to-one conversations work best for me, especially when I’m meeting new people in a new place. Once I get to know people, and they get to know my strengths and challenges, I can talk in a small group. It’s work, but I can do it.

I could come in some time next week to talk with you or Carol. Would Tuesday, June 30th work, in the late morning? Except for Friday, my schedule is fairly open right now.

All the best to you,

Rachel

Between the store and the school, I’m doing my best to be myself and to speak my truth. The problem is that I’m afraid that in doing so, I will just mess everything up. It’s happened before. I speak my truth and poof! Where did everyone go? So that’s kind of scary. Okay, very scary. Okay, so scary that I just want to cry. It’s to the point that I expect that everything will fall apart for me in the world if I come out about who I really am.

I went out today and bought some flowers for my garden. I had to get out of the house and go somewhere, and I had to cheer myself up. New perennials generally help. It’s too warm this afternoon to plant them, but hopefully, the evening will be cooler.

Thanks for listening. I’ll keep you updated.

UPDATE: Bob just got back from the store. He spoke with the store manager, who said that everyone really wants me to come back. Phew! Apparently, the time delay happened because she circulated the information I sent her to everyone on the staff (eek! I wasn’t expecting that!), just to make sure that no one saw a problem. I’m not clear whether she was asking about possible logistical problems (i.e. whether they can give me tasks to do that won’t overload me) or more personal issues (i.e. whether anyone at the store has a problem working with an autistic person). Anyway, no one saw a problem either way, and she’s going to send me an email tomorrow.

So, anyway, this is good news, yes?

This coming out stuff is rough, though. I’m feeling kind of exposed, on account of I just jettisoned all the masks I usually hide under. But it’s easier than hiding. Sometimes, it doesn’t feel that way, but that’s only because the pain of hiding is familiar. I’m not used to saying “Here I Am!” But I’ve got a feeling I could begin to enjoy the experience.

© 2009 by Rachel Cohen-Rottenberg

10 comments

Anxiety, Impatience, and Breaking a Process Down into Steps

June 23, 2009 Rachel Anxiety, Belonging, Community, Sensory Processing Disorder (SPD), Sensory Processing Issues, Volunteer Work

Less than three miles from my house, there is a non-profit, year-round day school for autistic people between the ages of 11 and 22. The school provides academic classes, work on social and emotional development, attention to fitness and sensory needs, and vocational training and entrepreneurship opportunities. The ratio of teachers to students is 1:4, and each student has an aide.

I contacted the school a couple of weeks ago, because it sounds like a place I might like to volunteer. I told them a little bit about myself—my recent Asperger’s diagnosis, my old career, my new life—and I asked whether they would be interested in my helping out. Within a couple of hours, I got a very enthusiastic response from a staff person named Stephanie. Her email began with the words “Wow! This is fantastic!” 

After some emailing back and forth, I’m in the process of figuring out the best time to go and see the school environment in action. I told Stephanie that I will need to take into consideration my auditory and visual sensitivities. Her reply, and I quote: “We’re flexible and completely willing to meet your needs.” Wow. She sent me a brochure with information about their summer program so that I could decide when to come.

So far, very good.  I am excited about the possibilities. I would be able to do some community service work with autistic people in an environment that takes our way of being into account. Being able to go somewhere and just be around other autistic people would be great for me, and being able to help support the kids coming up would give me a lot of satisfaction.

However, I’m noticing how anxious I feel over actually going there and meeting the staff. I generally get pretty anxious when I have to go to a new place and meet new people. That’s not unusual. What’s really got me going today is the fact that I can go there and be my autistic self. Arghh! Go somewhere and be autistic? I can almost feel the pathways in my brain twisting and turning to comprehend this new reality.

The anxiety is showing me the roots of my impatience. I feel so much anxiety that I want to fly over all the steps I need to take before I know whether volunteering there will work. I just want to plunk myself into a role there, have everyone be happy, and get started. The anxiety about having to go through all the steps on the way is really tough for me. It always is, but this time, precisely because I do not have to pretend to be neuro-typical, it feels even tougher. I’m so used to hiding all my autistic traits when I’m out in the world that it feels really hard to remember that I won’t have to. It feels backwards.

So, instead of being anxious and impatient, I figured that I should just take the bull by the horns and write the steps down. Then, I’ll see how harmless they really are. I hope.

1. Peruse the brochure and choose a day and time to go to the school. Send an email to Stephanie, and see whether that day and time will work for the staff.

2. The night before I go, try to get some sleep. (Okay, who am I kidding? I probably won’t sleep much.)

3. The day I go, I’ll be tired and anxious, but that will be okay. (Really? Truly?)

4. Meet with one or two staff people.

5. Spend some time in one of the classes, observing (or possibly participating in) an activity with the students.

6. Take careful note of how the environment is affecting me.

7. Talk with staff about their thoughts for how I might help out, including what days and times are best for them.

8. Go home and think about it a bunch.

9. Decide that it will work. ;-)

10. Start volunteering there. :D

© 2009 by Rachel Cohen-Rottenberg

11 comments

The Waiting Game, Part II: Help! Did I Screw Up?

June 21, 2009 Rachel Anxiety, Communication, Spectrum Pride, Volunteer Work

I’ve done it again. I’ve gone and spoken the truth, and now I’m wondering whether it was such a good idea.

Not that I would prefer lying, mind you. But I know that on the continuum between Telling the Truth and Lying Your Face Off is a vast, uncharted wilderness called You Know, You Don’t Have to Say Anything At All. It’s a place that I’ve been, many times, but I never feel quite at home there. I inevitably pack it up and head in the direction of Telling the Truth.

In the month of June, I’ve not only reached the land of Telling the Truth. I’ve also bought a house there, planted a garden, run for mayor, and used a megaphone to inform everyone of The Truth About My Life. I did it all quite consciously, knowing that it might not, er, work out as I’d hoped. The problem is that I don’t know whether it’s worked out or not. I’m still waiting to find out.

I hate waiting. I think I’ve mentioned that before somewhere.

So here’s what I did:

Submitted an article
June 7: I submitted a Viewpoint article to my local paper about my Asperger’s diagnosis and the top 10 worst myths about autism I’ve had to excise from my brain in order to keep my sanity be a proud and happy autistic person. The article will go onto the paper’s website some time later this month, and it will appear in the July issue of the paper, which can be found in various places all over town. I wrote the article in order to a) come out as an autistic person locally, b) advocate for autistic people, and c) let other autistic people in town know that I walk among them.

Given that the article hasn’t come out yet, I’m shaking in my shoes thinking, “Can’t I just go back to thinking I’m neuro-typical-and-neurotic instead of autistic-and-eccentric? It’s not too late to get the toothpaste back in the tube. Is it?” Then, I realize that yes, it’s too late to turn back now, and the shaking-in-my-shoes thing gets a little worse.

Wrote to an old friend
June 11: I wrote to an old friend from high school. The reason I made this stupid move decided to email him is that I was looking over a set of pictures he’d taken of me as a graduation present in 1976. I was looking at them because I was getting started on my book, and I needed to put all the pictures in one place. So, I wrote to him, and I told him that I was writing a book and had found all the pictures. I wanted to let him know that I still had the pictures, and that they mean a lot to me. It was a very short, friendly email.

On June 12, I got a really nice response, in which he was very excited to hear from me, had added me as a friend on his Facebook page, wanted to know what I’d been up to, and asked me about my book. (I’ll bet you know what’s coming, don’t you?) He also said that he’d love to see some of the photos. So, the same day, I wrote him back, told him about Bob and Ashlynne, where we live, what we do with our time, and yes, that I’m writing  a book about my life-with-Asperger’s-Syndrome-a-high-functioning-form-of-autism-and-that-learning-about-my-AS-has-been-a-great-blessing-in-my-life. I also attached four of the photos he’d wanted to see, which I had on my computer because I’d put them in a blog post.

I’m still waiting for the response that I know will never come. I used to put my foot in it and mention being an abuse survivor. Now I’m doing it with being autistic. But, hell, when people say “Hi, how are you, tell me about yourself and what you’ve been doing,” I can’t just say, “Hi, I’ve been doing just fine, I go to church every Sunday, and my life has been bliss.” I just can’t. I can’t, I can’t, I can’t. I don’t know whether it’s my brain or my heart or some evil demon who possesses me when I write emails to people I haven’t seen in 30 years, but I can’t help it. I have to tell them Who I Really Am.

It tends to put people off. I don’t get that. Yes, I know, there’s this whole little stupid social dance thing I’m supposed to do, but life is short and I have no interest in dancing around the truth.

Sent an email to two local people
June 17: I sent a copy of my “coming out” article to the store manager and volunteer co-ordinator at the store. I had emailed them previously, telling them that I needed to take some time off. They each sent me beautiful emails, and the store manager said that if there was anything they could do, I should ask. I had decided before I wrote my reply that I couldn’t go back to the store without coming out about being an Aspie. I’m sick of hiding. I just can’t do it anymore. So, when I sent my email, with the article attached, I told them that I really missed the store and that I wanted to sit down with them and figure out how I could best help out there.

Now, I know that a lot of people don’t read their email everyday. I also know that the store manager isn’t there every day, and that the volunteer co-ordinator just had a baby and is working reduced hours. I also know that maybe they need some time to digest what I wrote. My husband has reassured me that everything will work out, because they already love what I do there and finding out about my autism won’t change that. My therapist said exactly the same thing. Given that both Bob and my therapist are very down-to-earth, sensible people, I know that I should listen to them.

I also know that if the response is negative, it will actually be a good thing, because at least I’ll know that I should put my energy elsewhere. But I don’t want to put my energy elsewhere. I would really like to be at the store again. I miss it.

This waiting is so hard. I’ll keep you posted.

© 2009 by Rachel Cohen-Rottenberg

7 comments

The Waiting Game: A Conversation with My Nervous System

June 16, 2009 Rachel Anxiety, Sensory Processing Disorder (SPD), Sensory Processing Issues

A few weeks back, I had an email conversation with a friend about the difficulties of waiting—specifically, about waiting all day long for late-afternoon or evening appointments. 

Today, I’m struggling with this difficulty, and it’s my own doing. I scheduled a 4:30 appointment with my therapist this afternoon. It’s the only one she had available today, and since my husband can drive me there, I took it.

Silly me. When will I learn? The entire day leading up to an appointment feels so compressed. In order to get anything done, I have to think backward from the scheduled time: “Let’s see, if the appointment is at 4:30, I have to leave here by 3:45. That means, I’ll need to get my workout done by 3:00, so that I can take a shower before leaving…” I’d like to go on, but my head feels like it’s about to blow a circuit. I have enough difficulty sequencing tasks in a forward direction. Trying to sequence them backwards makes me want to weep.

In any case, while I’m waiting, I feel like my engine is revving, but I’m not going anywhere. It’s very difficult for me to do anything when I’m waiting. Even on a day like today, when I’ve cleared my schedule, the anxiety has been steadily increasing with every passing hour. As my OT would say, my nervous system is trying desperately to get my attention and defend itself. It’s as though I’m having the following internal conversation:

Me: “Why am I getting so agitated?”

My nervous system: “Excusez-moi? Do the letters AS mean anything to you? How about SPD? Ring a bell, any of it?”

Me: “Look, I scheduled an appointment for 4:30. With my therapist. What’s the big deal? It’s not like I’m asking you to do ten different things today. One. Just one.”

My nervous system: “Okay, look, it’s hard being with other people.”

Me: “Why? What’s wrong with other people? What are you, a goddamned misanthrope?”

My nervous system: “Ooh, wow, a big word. I’m in awe. You know, if you take that tone with me, I’m just going to get more agitated.”

Me: “Okay, okay. For goodness sake, just answer the question. Please.”

My nervous system: ”What question?”

Me: “What’s wrong with other people?”

My nervous system: “It’s not that anything is wrong with other people. They’re perfectly lovely. You’re perfectly lovely. Everyone’s perfectly lovely. Okay?”

Me: ”So, if we’re all so lovely, what’s the big deal?”

My nervous system: ”In case you’ve forgotten our conversation of, let’s see, the last five decades, I’ll tell you what the big deal is. Other people are a lot of work for me, especially if I have to get in a car to see them, or they’re in some unpredictable environment where someone might be talking too loudly, or….I don’t even want to THINK about all the stuff that could happen.”

Me: “Oh, come on, you’re getting overdramatic. We live in crunchy-granola-ville, for crying out loud. The worst thing that could happen is that we’ll meet someone singing Kumbaya.”

My nervous system: “Are you not listening? It’s not about whether the people are nice. It’s about dealing with people. Period.”

Me: “Well, you used to be able to deal with people. All day, every day.”

My nervous system: “Oh, G-d, not this argument again.”

Me: “What argument?”

My nervous system: “You know very well what argument. The one in which you want to know why I can’t keep breaking my ass for you constantly, like I used to.”

Me: “Oh, right, that argument. Well, why can’t you…Sorry.”

My nervous system: “Apology accepted.”

Me: “So, what’s so hard about being around people? Everyone ELSE does it.”

My nervous system: “Look, I’m not everyone else. I’m me. And for me, it’s work. Work, work, work. And then some more work. And then even more work. And oh, I forgot. Some more work after that, too.”

Me: “Yeah, but why is waiting so hard? Why can’t you just get agitated when we get to the appointment?”

My nervous system: “Look, dealing with one person in the outside world is work. And now, because you thought absolutely NOTHING of what I might need, you’re going to make me wait ALL DAY LONG, in suspense, getting ready for the fact that going out and seeing another person is going to be a lot of work. Gee, thanks. I only allow you to think, breathe, walk, talk, and eat. But don’t worry about me. I’m not all that important.”

Me: “Enough with the guilt trip. And calm down. Take a breath. Be here now.”

My nervous system: “Who do you think I am, the Dalai Lama? I’m not. The Dalai Lama is a bodhisattva, and G-d bless him, but I am an Aspie nervous system, and I WOULD LIKE A LITTLE RESPECT.”

Me: “Why are you shouting at me?”

My nervous system: “I try to ask nicely. I really do. But then, after all the many, many conversations we’ve had, you still insist on scheduling late-afternoon appointments, and it’s hard on me. I’m shouting to get your attention.”

Me: “Sorry. I’m doing the best I can.”

My nervous system: “Me, too.”

Me: “Friends?”

My nervous system: “I’ll believe it when I see it.”

I’d better go do my workout and get my nervous system to calm down. After all, we’re working on our relationship, and I need to do my part.

© 2009 by Rachel Cohen-Rottenberg

11 comments

The “Intense World Syndrome” Theory of Autism

June 2, 2009 Rachel Alternative Theories of Autism, Anxiety, Empathy, Executive Function, Eye Contact, Mind-Blindness, Perseveration, Sensory Processing Disorder (SPD), Sensory Processing Issues, Spectrum Pride, Theory of Mind (ToM)

In an October, 2007 article, Henry Markram, Tania Rinaldi, and Kamila Markram of the Brain Mind Institute, Ecole Polytechnique Fédérale de Lausanne (EPFL), Switzerland, posit a new theory about how the brains of autistic people work. They refer to autism as Intense World Syndrome, turning widely accepted thinking about autism on its head.

I recently stumbled across this article, so I thought I’d share some of its insights. While I dislike some of the authors’ attitudes toward autism and autistic people, their theory seems to reflect many of the ways in which we describe our own experiences.

I’ll get the negative aspects of the article out of the way first, and then we can look at the positive things the authors have to say.

Problems with the Article
1. There is the usual garbage about how we suffer from a horrendous disease. For example, the article begins with the following words: “Autism is a devastating neurodevelopmental disorder…”

They’re lucky I’m tenacious and hopelessly optimistic. And autistic and hyper-focused. Otherwise, I’d have stopped right there.

2. The authors show a stunning lack of knowledge about how autistic people learn and develop over the course of our lives. For example, the authors state, “Autism is now recognized as a neurodevelopmental disorder manifesting within the first 3 years after birth and progressively worsening in the course of life.”

I guess I’m lucky I can still write. I’d better get going on the rest of this post before I lose any more brain function.

3. The authors make the blithe assumption that autism can (and should) be cured.

They first posit that autism is a disorder in which the “normal unfolding of the genome can be sabotaged by an epigenetic attack.” An epigenetic attack is one that causes a genetic change without affecting the underlying DNA sequence. The authors speculate on possible causes of such an attack, such as environmental toxins.

But never fear. There’s hope for us mutants yet. The authors continue: “Understanding the ultimate cause of autism lies in understanding the nature of the epigenetic attack and developing the ultimate cure for autism lies in being able to prevent this attack and reverse its effects once it has occurred.”

So someday, someone may try to turn me into a normal person. Good luck.

4. They come to their conclusions based mainly on research using lab rats. (I’m not defending the rights of lab rats. I’m pretty warm and fuzzy toward most animals, but as far as I’m concerned, rats are on their own.) My issue is that they use rats to arrive at conclusions that they could also arrive at by talking to autistic people.

If I didn’t mind flying, being away from home, or going on sensory overload, I’d probably spend some time outside one of these labs with a sign reading:

TO THE NEURO-TYPICAL DOCTORS:
FORGET ABOUT THE RATS.
THERE IS AN AUTISTIC PERSON OUTSIDE.
SHE WILL TALK TO YOU FOR FREE.
JUST USE YOUR WORDS, AND YOU WILL FIND TRUTH.

Okay, so much for the problems. Let’s get to the good stuff.

Definition of Intense World Syndrome
The authors lay out their hypothesis in this way:

“Based on the recent multi-screening results obtained on the valproic acid (VPA) rat model of autism, we propose here a unifying hypothesis of autism where the core neurophysiological pathology is excessive neuronal information processing and storage in local circuits of the brain, which gives rise to hyper-functioning of the brain regions most affected. Such hyper-functioning in different brain regions is proposed to cause hyper-perception, hyper-attention, and hyper-memory that could potentially explain the full spectrum of symptoms in autism.”

Neurons process and transmit information by electrochemical signals in the brain. Sensory neurons respond to visual, auditory, tactile, and other stimuli. So, according to these scientists, autistic people do an excessive amount of sensory processing. We experience the sensory world more intensely than other people, we attend to details in a more focused way than other people, and we store information (that interests us) far longer than other people.

Makes sense to me.

They continue: “We propose that a common molecular syndrome is activated in autism that produces hyper-functioning in a coordinated manner by forming hyper-reactive and hyper-plastic microcircuits in different brain areas.” As far as I can tell, they are positing that the autistic brain reacts more strongly to sensory stimuli than a neuro-typical brain (thus, the “hyper-reactive” microcircuits), and rearranges the connections between its neurons more often than a neuro-typical brain (thus, the “hyper-plastic” microcircuits).

The researchers then suggest that our hyper-reactive and hyper-plastic microcircuits cause us difficulty in integrating sensory stimuli. Thus, we tend to focus intensely on one part of the sensory world, and we have difficulty shifting our attention:

“This core hyper-functioning pathology is proposed to cause the spectrum of autistic symptoms by rendering local neural circuits hyper-sensitive to novel and past stimulation, and once activated, these microcircuits could become autonomous, difficult to control and coordinate with the activity in other microcircuits. Hyper-reactivity and hyper-plasticity are therefore proposed to cause exaggerated perception to fragments of a sensory world that are normally holistically correlated…and furthermore to cause hyper-focusing on fragments of the sensory world with exaggerated and persistent attention. Such hyper-attention could become difficult to shift to new stimuli…The positive consequences are exceptional capabilities for specific tasks while the negative consequences are a rapid lock down of behavioral routines to a minute fraction of possibilities, which are then repeated excessively.”

The authors also discuss their finding that autistic people may have a hyper-reactive amygdala, the part of the brain that processes memory and emotion. Because the amygdala is hyper-reactive, they believe, we do not let go of fear memories in the same way as neuro-typical people. We therefore perseverate as a way to calm and channel our anxiety.

Having concluded that our brains are highly sensitive, the authors assert: “In such a scenario, the world may become painfully intense for autistics and we, therefore, propose autism as an Intense World Syndrome.”

I think that’s right.

Now for the fun part: upending the accepted theories.

Poor Executive Function Theory
The term executive function refers to a person’s ability to disengage from his or her current environment in order to act upon a model of behavior in the mind or a series of future goals. Because autistic people tend to have poor executive function and a preference for sameness and routine, researchers had assumed that this deficit derived from hypo-functioning of the pre-frontal lobes.

However, the Intense World Syndrome theory posits that poor executive function derives from hyper-functionality of the brain’s circuits, causing an autistic person to attend to, remember, and focus on particular pieces of information, especially stimuli in one’s current environment.

Theory of Mind (ToM) and Mind-Blindness
Just because it’s so wonderful to hear someone else say these things, I’ll let the researchers speak for themselves:

“Autistic people are thought to be severely impaired in empathising with other people and ‘reading their mind,’ which is captured in the ‘theory of mind’ or ‘mind-blindness’ theory of autism… The proposed deficits in reading other people’s feelings and thoughts and the lack in empathising with other people has been commonly used to explain the impairments in social interactions and communication as well as inappropriate responses in social encounters…

We…propose that the autistic person may perceive his surroundings not only as overwhelmingly intense due to hyper-reactivity of primary sensory areas, but also as aversive and highly stressful due to a hyper-reactive amygdala, which also makes quick and powerful fear associations with usually neutral stimuli. The autistic person may well try to cope with the intense and aversive world by avoidance. Thus, impaired social interactions and withdrawal may not be the result of a lack of compassion, incapability to put oneself into some else’s position or lack of emotionality, but quite to the contrary a result of an intensely if not painfully aversively perceived environment.”

I think they’re onto us now.

The Hypo-Functioning Amygdala Theory
I’ll let the authors speak for themselves again:

“The current version of the amygdala theory of autism assumes a hypo-functional amygdala, which leads to lack or inappropriateness of social behavior in autism. In this view, autists fail to assign emotional significance to their environment and for this reason are not interested in others, do not attend to faces, and fail to engage in normal social interaction…[W]e propose that this view may be not correct and that quite to the contrary, the amygdala in the autistic individual may be hyper-reactive which leads to rapid excessive responses to socio-emotional stimuli. In this view, the autistic person would be overwhelmed with emotional significance and salience. As a consequence, the subject would want to avoid this emotional overload and would have to withdraw from situations, such as social encounters, which are rich in complex stimuli.”

Amazing, isn’t it? I keep reading this paragraph over and over, just to make sure it’s real.

The “Autistic Person Is Missing Some Puzzle Pieces” Theory
Far from considering autistic people as incomplete individuals with missing pieces, the authors conclude that “the autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”

In Closing
I found my way to the Intense World Syndrome theory by way of a great article by Maia Szalavitz. The article discusses Intense World Syndrome and contains some very good information about autism and empathy. 

Looks like word is getting out.

© 2009 by Rachel Cohen-Rottenberg

26 comments

Getting an “Official” Asperger’s Diagnosis: A Personal Decision

May 26, 2009 Rachel Anxiety, Diagnosis, Stimming

I’ve heard people say that until you get a diagnosis from a doctor, you can’t be sure that you have Asperger’s.

I vehemently disagree. I unconditionally support the right of all Aspies to self-diagnose, and when someone tells me that he or she is an Aspie, I don’t ask for papers. Here’s why:

1. We know ourselves better than anyone else.

We are perfectly capable of turning our intelligent, hyper-focused, perseverating minds to the task of learning about AS, poring over the different diagnostic checklists, communicating online with other Aspies, and engaging in careful self-reflection. Once we’ve done all of these things, we know more about AS than your average general practitioner or psychologist. Unfortunately, all too often, these are the people to whom we go for answers.

2. Your average general practitioner or psychologist knows very little about AS.

I can’t even count how many times I’ve heard an Aspie say that a doctor or therapist blithely dismissed his or her concerns. And why? Because the Aspie could make eye contact and converse. Or because labels are restricting, so why would anyone want one? Or because the Aspie was expressing emotion and empathy, and as we all know, people with Asperger’s are walking automatons.

3. Talking with a professional who knows very little about AS can be a very painful experience.

Five days before my assessment with an AS specialist, I went to my therapist for support. I had barely spoken the words “I feel certain that I have Asperger’s” when she started arguing with me. I spent the remainder of the session defending myself. Apparently, the fact that I could speak to her and make eye contact took me out of the running.

It’s very difficult to have these kinds of experiences when first exploring Asperger’s. For me, those first days and weeks of realization were surreal. I felt very relieved that so many pieces of my life were falling into place, but I also felt very weirded out that so many of the things I’d worked hard to overcome were simply hard-wired into my neurology. While it was a relief to know, for instance, that making lists isn’t a sign of some deeply intractable neurosis, it was also difficult to realize that I make lists all the time because my brain wiring causes me to have trouble with sequencing, memory, and the modulation of visual, auditory, tactile, vestibular, and emotional stimuli.

I was relieved not to be the psychological mess I’d always thought I was, but it was mind-bending to hear myself say, “Oh, so I’m autistic. That explains it.” I really needed some support, and when it wasn’t there, it was devastating.

So why did I go for an “official” diagnosis anyway? After all, I’d done my homework, everything in the DSM-IV fit me, and my husband corroborated all of my observations. I knew that I was right. But after 50 years of feeling invisible, unworthy, and utterly strange, I wanted someone out there to see me, hear me, understand me, take me seriously, and not send me away until I got a label that would stick.

I don’t think that many people understand the disorientation of not having a label, of not being able to give one’s way of seeing a name. I wanted a label, and I wanted it from someone other than myself. I suppose it’s my yearning to be part of the social world, to participate in that experience in which people mirror one another and help one another find identity. I’d always been the lone ranger, creating my own definitions, and asserting my own understanding. Except for my husband, I had never had a clear mirror, and when it came to an Asperger’s diagnosis, I knew how deeply I needed one. I wanted someone else to call me an Aspie, to acknowledge my group identity, and to give me my name.

Not surprisingly, the days leading up to my diagnostic assessment were almost unbearable. Coming to the understanding that I had AS was surreal, but the possibility of having that understanding denied was worse. It was utterly terrifying. Once I cut through all of my resistance to authority, my anxiety in new situations, and my awkwardness with strangers, the thought that I might go to the specialist and not be diagnosed with AS was enough to keep me up at night. It occurred to me that this fear, in and of itself, must be undeniable evidence that I have Asperger’s. I mean, have you ever met a neuro-typical person who feared not being diagnosed with an autism spectrum disorder? I certainly haven’t, but I wasn’t sure that the specialist would take this fact into consideration.

The good news is that the diagnostic session was a great experience. The doctor asked my husband and me a lot of questions. He observed my behavior and saw right through my well-honed NT acting skills. Of course, I was stimming a fair bit (okay, a lot), so that probably gave me away, along with the fact that he was able to read those nonverbal signals that everyone keeps talking about. (Don’t worry if you’ve never seen one. I haven’t either.) He pronounced me an Aspie, and he reassured me that having Asperger’s is not a problem. The problem is the way that the rest of the world sees us.

So, for once in my life, rather than telling me to “think outside the box,” someone gave me a nice box of my very own in which I could cuddle up and rest. And with this box came a diagnosis that explains practically everything about me. It was like being handed my own personal Rosetta stone. For the first time, my life made sense.

And when I got the receipt for the session, with a diagnosis of Asperger’s right there in black and white, I framed it. It hangs in my loft, a constant reminder of the day that my life truly became my own.

© 2009 by Rachel Cohen-Rottenberg

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