Archive for Anxiety

When Medications Do Harm

November 10, 2011 Rachel Anxiety, Depression, Medications, Sensory Processing Issues

S-O-S Best of the Best (BoB) is a collection of bloggers who come together once a month to write on one topic pertaining to “invisible” special needs, including ADHD, autism, anxiety, sensory processing disorder, and mental illness. I was asked to contribute a post for this month’s topic on the use of medications. The following excerpt from my new book, Blazing My Trail: Living and Thriving with Autism, discusses my experience of taking Lorazepam, a benzodiazepine, and the healing I’ve found since withdrawing from the medication.


My Experience with Lorazepam

“The biggest drug-addiction problem in the world doesn’t involve heroin, cocaine, or marijuana. In fact, it doesn’t involve an illegal drug at all. The world’s biggest drug-addiction problem is posed by a group of drugs, the benzodiazepines, which are widely prescribed by doctors and taken by countless millions of perfectly ordinary people around the world.”   — Vernon Coleman

In February of 2005, to treat an increase in my level of anxiety, my primary care doctor prescribed a medication called Lorazepam. Little did I know that taking this drug would send me on a years-long journey of coping with ever-increasing depression, fear, loss of functioning, and social isolation.

Fortunately, in 2010, I changed course and began walking a new road. I engaged in the process of learning about how the medication had affected my life, and I went through the ordeal of weaning off it. As a result, my high level of functioning, my independence, and my zest for life have all returned.

Medication Withdrawal and Other Delights
From early 2005 until early 2009, I took one 0.5 mg tablet of Lorazepam upon awakening in the morning and another before going to sleep at night. After I had been on the medication for four years, another doctor increased the dosage to 0.5 mg in the morning and 1.0 mg at night. By early 2010, I was taking 2.0 mg per day. A third doctor also put me on Zoloft (an SSRI) and Topamax (for migraine prevention), in addition to Lorazepam and Amitriptyline (a tricyclic antidepressant).

By the spring of 2010, I had begun to realize that the medications, far from helping me, were making it increasingly difficult to manage my life. I was crying almost every day and I was nearly housebound. So I began the process of weaning off all of them — without medical supervision. My primary care doctor had fired me from her practice after I asked for accommodations for my disability, and it took me over a month to find another doctor who would accommodate me and guide me through the weaning process.

Meanwhile, I was on my own.

Tapering off Zoloft, Topamax, and Amitriptyline posed no problem whatsoever. Quitting Lorazepam, however, was another story. After attempting to withdraw from Lorazepam by decreasing my dosage by 0.5 mg per week, I suffered an acute reaction. I began to
have a tremendous amount of anxiety, and my sleep worsened. After I stopped taking the medication altogether, I hardly slept for two nights. I was sweating through my clothes. I was crying and frightened. I was in so much physical pain that it was almost unbearable. I felt as though my body and mind were coming apart. I found myself pacing up and down the floors of our house saying, “Misery, misery, misery.” Without a physician to consult, I couldn’t understand why the withdrawal was having this impact.

With nowhere else to turn, I went online and looked up information on how to taper off Lorazepam without pushing myself to the edge of sanity. When I did, I found out that it’s a benzodiazepine and a tranquilizer. In other words, it’s in the same category as Valium and Librium, and it’s highly addictive. In fact, in 1975, the U.S. Department of Justice demanded that benzodiazepines be classified as schedule IV drugs under the Controlled Substances Act.

And yet, this medication had been prescribed for me by three different doctors — even after I had told them, in no uncertain terms, that I absolutely did not want to take anything narcotic or addictive. What part of that statement did they not understand? Or did they just not know what Lorazepam does?

As I soon found out, I was not alone in suffering acute withdrawal symptoms. According to Professor Malcolm Lader, member of the UK Committee on the Review of Medicines, Lorazepam is a particularly difficult drug to withdraw from. “When somebody comes into my office and says that they’ve been trying to stop their Lorazepam,” he said, “my heart sinks, because I know I shall have twice as much of a problem as getting them off, say, Valium. The symptoms are more severe, they’re more persistent, more bizarre, and people are much more distressed by them.” (Ashton, “A Problem”)

In my online travels, I found a support site for people seeking to withdraw safely from benzodiazepines — and I learned that, when done properly, the process takes six to 12 months. So, in early May of 2010, I put myself on a stabilization dose of 1.5 mg per day, and I found myself able to sleep and to tolerate being in my body again. After three weeks, I began tapering very slowly, cutting my dosage by very small decrements, until I finally finished my taper, under the care of a new primary care doctor, eight months later.

Suffice it to say that, even over the course of a slow taper, the withdrawal process was brutal. Every time I made a cut in my dosage, I experienced extreme amounts of muscle pain, insomnia, anxiety, depression, and exhaustion. I was determined to rid Lorazepam from my body, though, and by the grace of God, I have.

But the havoc this medication wrought over the years I took it is, unfortunately, an all-too-common effect of benzodiazepines.

Daily Interdose Withdrawals
Lorazepam is a short half-life benzodiazepine. On average, the dose reaches its peak blood levels in about seven to eight hours. As I came to understand how quickly the concentration of the drug in my bloodstream was falling each day, my experience of the previous four years started to come into focus. Because I had been taking the medication only in the morning and in the evening, I had been going through interdose withdrawals on a daily basis, with all the same symptoms that would attend my eight-month taper.

That’s right: I had been having withdrawal symptoms every single day for four years. No one had ever warned me about how the medication worked, so I couldn’t figure out why I was on such a physical and emotional rollercoaster ride. Nothing in my life seemed to account for it, and the only response from my prescribing doctors was to increase my dosage.

These increases did not work. In addition to the impact of falling blood concentrations, daily withdrawal symptoms occur because of the tolerance that the body develops, very quickly, to the drug itself. As Dr. C. Heather Ashton writes in Benzodiazepines: How They Work and How to Withdraw, these drugs “lose much of their efficacy because of the development of tolerance. When tolerance develops, ‘withdrawal’ symptoms can appear even though the user continues to take the drug.” (Chapter II)

Because they quickly become ineffective and trigger daily withdrawal symptoms, benzodiazepines cause a host of problems, many of which they were intended to manage. In early 2009, after four years of benzodiazepine use, I exhibited difficulties common to benzodiazepine users. I was crying on a regular basis. I was falling into a depression unlike anything I had ever experienced. My anxiety was nearly paralyzing. And I had become almost housebound. The outside world felt overwhelming, and going out triggered both fear and exhaustion.

All of these symptoms amount to a textbook case of the impact of benzodiazepines. In her research, Dr. Ashton determined that people who use these drugs become ill with a number of psychiatric conditions. “Many patients,” she writes, “find that anxiety symptoms gradually increase over the years despite continuous benzodiazepine use, and panic attacks and agoraphobia may appear for the first time after years of chronic use.” She adds that long-term benzodiazepine use can cause depression in people with no history of it and can aggravate depression in people already suffering from it. (ibid, Chapter I)

Heightened Sensory Sensitivity
As a person with autism, I found that all of the symptoms that attend benzodiazepine use were exacerbated by the impact of interdose withdrawals on my sensory functioning.

By early 2009, I was more sensory sensitive than I had ever been in my life. Sometimes, my skin felt like tissue paper; at other times, loud noises were enough to send me into physical pain that took me days to recover from. Light seemed very bright, and I began wearing sunglasses, even on winter days. I became overwhelmed by this sudden severe spike in sensitivity, and every foray into the outside world took all the courage and energy I could muster. My level of functioning decreased significantly. Most days, I just stayed home. I couldn’t figure out what was happening.

Then, I read Dr. Ashton’s findings on benzodiazepine withdrawal and sensory sensitivity. She notes that “a characteristic feature of benzodiazepine withdrawal is a heightened sensitivity to all sensations — hearing, sight, touch, taste and smell. When extreme, these sensations can be disturbing.” She describes one woman needing to stop all the clocks in her house because their ticking seemed unbearably loud. Others have had to wear dark glasses because ordinary light seemed “dazzlingly bright.” (ibid, Chapter III) I’d finally found an answer to the question of why my sensory sensitivities had increased so dramatically in a relatively short period of time: the daily interdose withdrawals were sending my already acutely sensitive system into overdrive.

After four years of benzodiazepine use, I could barely socialize at all. I felt very isolated and I suffered from severe levels of stress that were lowering my levels of functioning. As I learned about the havoc that these drugs wreak, I considered myself lucky to be tapering off them before they stole any more years from my life.

Recovering from Benzodiazepines
The good news is that my functioning and my quality of life have improved dramatically since withdrawing from Lorazepam. Just halfway through a difficult taper, I found my mind becoming clearer and my mood lifting. I felt more physically and emotionally resilient than I had in years.

As my taper progressed, I began to feel alive again. I still had my sensory-sensitive “I don’t want to go anywhere” days, but even on those days, I forced myself to go out for a walk, just to keep intact my connection to the world. In so doing, to my great surprise, I found my connection to the world not limited to human beings, but to all of creation. I began to walk and appreciate the trees, the colors, the breeze blowing — even the humid weather of a New England summer. I carried my camera with me everywhere and I took pictures that enabled me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world became a fascinating place. Ultimately, I entered three of my best photos in a local contest, won second prize, and had the pleasure of seeing my work displayed in town with that of other photographers.

Since I’ve withdrawn from the medication entirely, the positive effects have only increased, and my sensory sensitivities have quieted down appreciably. I go out every day, in any weather, even in winter. I’ve made new friends and rekindled relationships with old ones. The depression and agoraphobia are both entirely gone, and my high levels of functioning and independence have returned.

My experience is not unique. In 1991, Karl Rickels, a researcher at the University of Pennsylvania School of Medicine, reported that patients who had gotten off benzodiazepines were doing “significantly” better than those who had failed to do so. A few years later, he found that after long-term users withdrew from benzodiazepines, they “became more alert, more relaxed, and less anxious, and this change was accompanied by improved psychomotor functions.” (Whitaker, 136-137)

As for Dr. Ashton, she found that agoraphobia in her patients disappeared within a year of withdrawal, even in patients who had been housebound. Furthermore, most users experienced a dramatic increase in quality of life after withdrawal:

“Clinical experience shows that most long-term benzodiazepine users actually feel better after coming off the drugs. Many users have remarked that it was not until they came off their drugs that they realised they had been operating below par for all the years they had been taking them. It was as though a net curtain or veil had been lifted from their eyes: slowly, sometimes suddenly, colours became brighter, grass greener, mind clearer, fears vanished, mood lifted, and physical vigour returned.” (ibid, Chapter II)

When I was on benzodiazepines, my emotions were scattered, my sensory sensitivities were through the roof, and I found it difficult to think clearly. Since I’ve stopped taking them, my emotions have become much more moderate, positive, and under my control; my sensory sensitivities have become much more manageable; my thoughts have become sharper by the day; and, best of all, my passion for living has returned.

References

Ashton, C. Heather. “Benzodiazepines: How They Work and How to Withdraw.” benzo.org.uk. August 2002, revised. Accessed 21 June 2011. http://www.benzo.org.uk/manual/

—-. “A Problem with Lorazepam?” benzo.org.uk. 1988. Accessed 21 June 2011. http://www.benzo.org.uk/ashloraz.htm

Coleman, Vernon. Life without Tranquillisers. Large print ed. Bath, England: Chivers, 1990.

Whitaker, Robert. Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America. New York, NY: Crown Publishers, 2010.

© 2011 by Rachel Cohen-Rottenberg

20 comments

Autism and Fear

March 14, 2011 Rachel Anxiety, Disabilities

Temple Grandin said recently that the principal emotion experienced by autistic people is fear. Of course, there are any number of reasons for that fear—the experience of having been bullied or otherwise abused, the painful nature of sensory overstimulation, the realities of social isolation, and so on—but whatever the reasons, the anxiety is real.

I have felt the undercurrent of fear all my life, and these days, it’s become more intense. I’m aware that it keeps getting hooked onto a number of different scenarios, both real and imagined. I’m not going to rehearse them, because they are not the source of the fear, and going into particulars would only give the fear more power. None of these situations causes me to be afraid; rather, the fear seems to be there, and it attaches to whatever future scenario comes to mind.

Right now, the fear feels like a chill wind blowing right through me. I have periods of release from it, but when it arises, it’s very difficult. I’m assuming that it’s arising because, having formerly been damped down by five years of benzos, it’s now free to express itself, and it wants my full and undivided attention. And the fact that I keep saying to it things like, “Well, I’m doing the food shopping right now, so bugger off,” doesn’t seem to send it packing. The fear is not getting in the way of my daily functioning. I am continuing to go about my life, taking care of business, fulfilling my responsibilities, and doing the things I enjoy. But I feel like I’m carrying a burden that I’d like to put down for awhile.

Part of me feels that dealing with my fear is a good thing: being able to face one’s fear and handle the experience is strengthening. But part of me would like a serious break, too. So, I’m going to my doctor on Thursday to talk about getting a prescription for Lexapro, an SSRI that is supposed to be very good for treating anxiety as well as depression. I don’t feel depressed, but dealing with the anxiety every day is an emotional burden, and trying a little bit of pharmaceutical help isn’t a bad idea. I don’t necessarily want to banish the fear entirely, since it’s a lifelong issue that needs to be dealt with, but I’d like to lessen its intensity and make it more manageable.

© 2011 by Rachel Cohen-Rottenberg

40 comments

Feeling Freaky

April 1, 2010 Rachel Ableism, Anxiety, Belonging, Community, Disabilities, Marginalization, Stimming

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

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

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

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

9 comments

Take-A-Chance Airlines: Fly with Us! It’s a Family Business!

December 28, 2009 Rachel Anxiety, Belonging, Childhood

My fellow autistic wonder-folk, I wish to share with you the history of the family business–my family’s business. It’s a multi-generational, multi-regional business and yet, it’s also a well-kept, closely guarded secret of a business. I can’t begin to speculate on how it became such a wildly successful enterprise, given that most of you have never heard of it, but believe me, it’s been thriving for a long, long time. 

Legend has it that the company began in a shtetl somewhere in Poland, a shtetl where it was very cold, and the people kept warm by coming up with business plans and feeding the cookstoves with them. One of my illustrious ancestors, however, seems to have carved out a business plan in secret—a visionary plan—which he passed onto his firstborn son, who passed it onto his firstborn son, who passed it onto his firstborn son, and so on, and so on, ad nauseum, until this very old and very visionary business plan ended up in the duffle bag of a great-great-ancestor, who carried it with him in steerage when he set out for America.

To make a long story short, I grew up in the very heart of the family business. Although its true name was rarely spoken, I distinctly remember my mother making a joking reference to Take-A-Chance Airlines. Had the rest of the family not loudly shushed her at that moment, I would have forgotten the incident altogether, but shush her they did, and the secret was out: my parents owned a majority share in Take-A-Chance Airlines. Can you imagine the nausea excitement I felt? 

When I was small, of course, the company was barely out of start-up mode. It was limited to a few offices in a motel, a small apartment, and other decidedly unglamorous places. But as I grew, the company grew with me. By the time I was 11 years old, we had quite a fleet. I mean, the planes! Oh my God, you should have seen them! They were so shiny and so new, inside and out. There were purple plush carpets, purple upholstered chairs, valuable antiques, brand-new lava lamps, and a TV set for every passenger. It was unbelievable!

And you’ll never guess the best part. No. You won’t. I’m telling you. Are you ready?

They paid you to fly on the airplanes! Yes! They really did!  Sometimes, they paid you in cash that came in birthday cards; sometimes, they took you shopping for school clothes; and twice a year, they took you on an all-expenses-paid vacation to places like Florida, Bermuda, Nova Scotia, and Quebec. I don’t know how they managed to remain profitable by paying folks to fly with them, but the money kept coming in like nobody’s business. Of course, the CEO would complain at the dinner table that he was worried about finances, but from what I could see, everyone on those airplanes had all the comforts of home.

Well, most of them did. But not all. Oh, no. Not all. There were two small children, and they were not so very comfortable at all. They had beautiful seats on one of the biggest airplanes, but every now and then, someone would come over to the girl when she was sleepy and touch her in ways she didn’t like. And then sometimes, someone would come over to the boy or the girl and begin beating one of them for no apparent reason. And yet, miraculously, whenever a stranger came onto the airliner, the little girl would play the piano beautifully (yes, there was even a piano on the plane!) and the little boy would do his very best not to bring a hose through the window and flood the passenger area again.

Those were the days! Of course, there was a catch. It wasn’t called Take-A-Chance Airlines for nothing. While the fare was unbeatable, the planes seemed to tumble out of the sky on a regular basis. Sometimes, in the heady days of my youth, I would rush the cockpit, push all the buttons at once, lean into whatever would move, and get that baby back up into the air. But sometimes, I just didn’t know how to do it, and the plane would crash. I have the scars to to prove it. They’re not pretty, so I’m not including photographs. They’re mostly where you can’t see them anyway.

By the time I was in high school, I had started to wise up. I began carrying a parachute, a bedroll, a good pair of walking shoes, several days’ worth of water, and a map every time I got on a plane. I hid everything in my backpack, of course. I had to. You see, it was a well-known fact that on Take-A-Chance Airlines, the planes never crashed or even came close to crashing, which confused my little Aspie mind no end. However, I was smart enough to understand that if I carried a parachute in plane plain view, it might appear that the plane might crash, and then the whole family business would be ruined, all because of me. So I learned to mind my Ps and Qs, let me tell you.

By some miracle, I survived into adulthood. And then, one day, after one touch and one crash too many, I resigned my seat on the board of directors and left my interest in the business to my younger brother. From what I understand, he took over the business after our parents died, and he got their entire inheritance in the bargain.

But I’m getting ahead of myself. As I grew further and further away from the family business, I began to think more clearly about it. After paying people to listen to me rant and rave on a weekly basis for several years, I began to realize that the planes really had been crashing all those years, and that I wasn’t confused or crazy at all.

I want to say that the story ends there, and that I lived happily ever after, but I have two terrible weaknesses: 1) I am a very visual Aspie, and 2) I believe that somehow, somewhere, in one of the company’s regional offices, in a galaxy far, far away, there is a plane that will not crash. And so, after a long time away from the business, I began emailing distant family members on my mother’s side and asking them for old family photographs. Sometimes, I would get wonderful photographs, which I would gaze upon for hours on end. The words that came with the photographs were friendly enough, but I didn’t forge any new or close family relationships with their senders, so I began asking for photographs closer to home. With some desperation, I went to one of my uncles—just one of the innumerable family members who had never called to ask why I’d up and left the family business in the first place. I knew that contacting him was a foolish thing to do (kind of), but I really, really wanted those photographs.

And family. I wanted family. And a plane that wouldn’t crash. And I thought I’d found it when I first emailed my uncle. But I was wrong. As we emailed back and forth, the plane pitched and rolled worse than ever before. And while it was pitching and rolling, I found out that my parents had convened a family conclave in New Jersey, in which it was agreed that if one of their offspring, whose name begins with an “R,” were to contact any other family member for any reason, they were to put her on a plane that would begin its plunge the minute she began to relax and get comfortable.

And that’s exactly what happened.

As you can well imagine, the next several months of my life consisted of paying more nice people to listen to a spirited recitation of all the email exchanges that had taken place as the latest plane was diving into the ground. After awhile, I began to get hoarse, so I stopped talking and began to feel better. And when I began to feel better, I swore off doing stupid things like calling Take-A-Chance Airlines and using my real name to ask for a seat on a plane that wouldn’t crash.

For a while.

However, recently (I know, I know, you don’t all have to groan at once, do you?), I decided to toddle over to my father’s side of the business and see whether there might just be someone who had a little genealogical information and a whole bunch of a few really cool old family photographs of some kind or another. So I looked up people with my father’s surname on Facebook. You know, Facebook. Where you find your friends? And do social networking? What could possibly go wrong? I mean, there’s no sign that says, “Abandon hope, all ye Aspies who enter looking for unknown family members.” If there were a sign like that, I wouldn’t go near the place.

Anyway, as usual, my contact with my new family member started off nicely. I got settled into my chair. The handsome steward asked me whether I needed an additional Ativan to take the edge off my anxiety. I thanked him and said I’d take two. He gave me a glass of crystal clear spring water to wash them down. Everyone was cordial. I was cordial. I was. I was so fucking cordial,  I swear to God, every one of you would have mistaken me for an NT. Really. You want proof? Okay. Here’s proof:

My cousin Ralph (not her real name) sent me a packet of photos that arrived last Tuesday, December 22. Here is the email I wrote in response:

Hi Ralph,

I received the photos today. Thank you so much for sending them! I have been sitting in front of our woodstove, gazing at them. I especially love the ones with **personal family information excised for brevity…**

Again, thank you for sending the pictures. I’m really quite crazy about family photos of any kind, and have a whole wall of photos from my mother’s side of the family, going from my grandparents’ generation and back into the late 19th century.  I’m so glad to begin collecting photos from my father’s side as well.

All the best,
Cousin Rachel

Here is what Ralph wrote back by email the same day:

 Hi Rachel,

I am pleased that you are enjoying the pictures I sent.  I have many more and am experimenting with our new computer.  I think we have figured it out and am attaching some additional pics.  Please let me know if you get them and I will send others.

* Information about attached photos deleted for brevity *

When I hear from you, I will forward some more.  Hope you enjoy them.

Have a good evening.
Cousin Ralph

Here is what I wrote back by email the same day:

Ralph, these are gorgeous! I love them. THANK YOU!

Cousin Rachel

Did you notice the part where Ralph says she will forward more pictures when she hears from me? Five days later, I had not received a single picture. So, I remained my cordial, restrained, friendly self and wrote her the following email:

Hi Ralph,

I don’t know whether you got my previous message. I just want to make sure you know that the photos came through just fine, and that I really appreciate them.

All the best,
Rachel

Here is the response I received an hour later:

Enjoy

That’s it. One word. No salutation. No proper names. No punctuation. Nothing.  So, I figured I’d take one more careful crack at it (I know, I know, it’s getting pathetic already):

Thanks! I am.

The last time you wrote, you mentioned that you’d send more pictures once you learned that I’d received the ones you sent. Just checking in to make sure that all is well.

All the best,
Rachel

Now, I will freely admit that I am working with a couple of subtexts here. When I ask whether all is well, what I really mean is the following:

I hope no one has fallen gravely ill. I really do. However, in my heart of hearts, I know it’s more likely that you’ve been talking to my brother, or to my uncle (who just happens to live in the same town that you do), and that one of them has told you, in no uncertain terms, that I’m the most vile creature ever to walk the earth. And why do they say this? Because I got sick of being hurt by the two (count them, two) people in the family who were responsible for the unwanted touching and undeserved beatings of my childhood, and so I left them behind, and I saved my own life. And I’m sure that whoever you’re talking to has repeated the lie that those two people told everyone. What lie? That I’d written them a letter and told them that if they ever contacted me again, I’d call the police and accuse them of abuse—something that I never, ever threatened to do.

Why does no one believe me?

Oh, yeah, that’s right. The family business is called Take-A-Chance Airlines, my name starts with an “R,” and I always get the plane that crashes—except that the propaganda advertising for the business claims that none of your planes has ever crashed. So you’d better ignore me, because you might just have to acknowledge what really happened, and that would be outside your comfort zone.

Of course, I’m not going to elucidate the subtext to Ralph. At least, not right away.

Somehow, I don’t think I’m the one with the problem here. Except, of course, that I keep hoping to find someone who can stand outside the family business for more than a day or two. Someone simple, who uses words that mean something, and follows through on them. Someone like me.

My mistake.

© 2009 by Rachel Cohen-Rottenberg

11 comments

When Our Hopes Get in the Way of Caring for Ourselves

October 11, 2009 Rachel Anxiety, Belonging, Communication, Empathy, Friendship

Virtually all of us have had the experience of letting our hopes blind us to what is actually going on. There are a few spiritually attuned people in this world who, more often than not, respond to exactly what is happening in the moment, but alas, I am not one of them. Like most people, I get derailed by what I want, by what I need, and by what I fear. And, like most people, I suffer the emotional consequences of the clash between my projections of what will happen and the reality on the ground.

As an autistic person, though, I find that the physical impact of letting my expectations get in the way of my better judgment is often profound. Since Thursday, I have been dealing with the physical impact of meeting with my nonverbal autistic counterpart (whom I’ll call Jenny) and the very kind neuro-typical man with whom she shares a home (whom I’ll call Joe). While there were many good things about our visit, I’ve allowed the good things to get in the way of noticing the impact of the difficulties. Since our visit, I’ve had intense and troubling dreams. I’ve woken up every morning with my heart racing. I’ve been on the edge of a migraine almost constantly. Today, I am finally figuring out that something went wrong, but only because my body has been screaming at me for three days to listen up.

So, I’m listening. What I’m learning is that my very tenacious mind ignored a long series of “uh oh” moments that might have helped me care for myself in essential ways.

Here’s how it started: The week before last, when we were planning the visit, Joe and I had some wonderful email conversations. He is a very good person who is trying his best to understand what Jenny needs, and his emails reflected that. However, there were signs that his hopes for the visit were beginning to get the better of him. I could see his very great need for respite and his very great desire for Jenny to find a friend. A little tiny voice inside me said “uh oh,” but I ignored that tiny little voice.

I know exactly why I did it, too: Joe’s need for the situation to work exactly mirrored my own. I very much wanted to make another friend, and I very much wanted to stretch my consciousness of what friendship means altogether. So, over the course of a week, Joe and I built a picture of what we hoped would happen, despite the fact that I had never met Jenny and she had never met me.

In his emails, Joe had described Jenny as being very easy-going and able to go almost anywhere without a lot of difficulty. On the day of the visit, however, Jenny was quite agitated. I could see it the moment they got out of the car. Joe said that she rarely becomes agitated, and that he wasn’t sure why it was happening. I thought perhaps it was just anxiety at being in an unfamiliar environment, but he said that she’d woken up jittery that morning. That little voice in my head said “uh oh” again, but I told it to be quiet and to stop bothering me.

As a result, I quickly overrode my own agitation and tried to be a welcoming host. I invited Joe and Jenny into the house, where Jenny began to move furniture and grab food out of the refrigerator. I was so intent on being welcoming that I discounted how unsafe I was beginning to feel. Jenny isn’t much taller than I am, but she is one strong woman with a very strong will. It was quite difficult to get her to move away from breakable pieces of my daughter’s artwork. The little tiny voice in my head peeped “uh oh” again, but to no avail. I wasn’t listening.

After a short time, we decided to go out for a walk. Jenny and I walked hand in hand, while Joe followed behind. I understood why Joe was there: he wanted to be sure that Jenny felt safe and that I could keep her safe. I kept telling myself that it was fine, but there was that threesome thing happening, and y’all know what happens to me in crowds of three. Uh oh. I was enjoying Jenny and our walk, but I was also getting overloaded.

When we got back, Joe seemed disappointed in the visit. I got the feeling that he’d been hoping that I’d seem more like Jenny, and that I’d be a kind of bridge between them. So, yes, wanting desperately for things to work, I began to articulate the ways in which Jenny and I were alike. At the same time, I was keenly aware of the fact that Joe viewed me as far more neuro-typical than autistic. And yes, that poor little muted voice whispered “Uh oh, and maybe you should keep your mouth shut now?” but there was no point in ruining a perfectly spotless record of ignoring every last signal to take care of myself. So, I tried to explain that I’m autistic and not neuro-typical, which meant that I was talking far too much, for no good reason, and exhausting myself in the process.

Will I ever learn that explaining myself does not work? (I’m aware that the question is beginning to sound rhetorical, and it concerns me.)

In any case, it’s pretty clear to me now why Jenny felt so agitated. Over the course of a week, the expectations that Joe and I were co-creating had become apparent and Jenny had picked up on them. Great expectations of an unknown situation would make anyone agitated, especially an autistic person who is acutely aware of what is going on around her. The fact that she couldn’t verbalize her discomfort doesn’t mean that she didn’t understand what was happening. I’m sure she did. I’m completely agitated by the whole thing three days later, so her agitation should not have come as a surprise to me at all.

Time to let go. This relationship will not work, despite everyone’s best intentions. That little voice whispering “uh oh” has become rather loud, I’m afraid. It’s now shouting things like “Am I not getting through to you?” and “If you keep on with this, you’ll get a full-blown migraine.”

After three days, I can finally say to myself, “Look, it didn’t work for you, and it didn’t work for Jenny. That’s really okay. Other good things are happening, so just keep moving forward.” My head still hurts a bit, but my heart rate is beginning to return to normal.

© 2009 by Rachel Cohen-Rottenberg

4 comments

How to Navigate without a Sense of Direction

September 3, 2009 Rachel Anxiety, ASL, Disabilities, Sense of Direction

Yes, the title of this post is a very apt metaphor for my life at present, but my intention is to write about how to literally navigate when you literally do not have a sense of direction.

My ASL class begins next week, so I decided to walk the route to and from the school. I have learned the hard way that if I want to arrive at any new place on time, I must do a trial run and make sure that I know the route. So, before I made my way to the school for the first time, I looked up the route online. Since I can’t read a map very well at all, I simply printed out the written directions:

1:  Start out going SOUTH on JUNIPER ST toward ALDER ST.

2:  Turn RIGHT onto ALDER ST.

3:  Turn LEFT onto CATALPA ST.

4:  Turn RIGHT onto HOLLY ST.

5:  Turn SLIGHT RIGHT onto WILLOW ST.

6:  Turn RIGHT onto QUINCE ST.

7:  Turn LEFT onto REDWOOD ST.

8:  Turn RIGHT onto HAZEL ST.

9:  Turn LEFT onto LILAC DR.

10:  100 LILAC DR is on the LEFT.

Yesterday, I set off for the 2 ½ mile round trip. Because my directions were clearly printed, I had no trouble finding the school at all, and I was delighted by what I saw: children playing soccer, a beautiful, green campus, and plenty of parking. I was able to locate the building in which I’d have to check in, but I decided that I didn’t want to venture too much further onto the campus. I wondered whether someone might ask me whether I needed help, and I was anxious that I wouldn’t know how to respond. I don’t know sign language yet, and since I was wearing my headset, I wouldn’t be able to speak to anyone, either.

All the same,  I was quite pleased to have found the campus without difficulty, so I turned around and headed for home. The key words here are turned around. Turn me in a direction different from the one in which I’ve started, and I’m lost. (And yes, I mean that literally as well as figuratively.) Unfortunately, I hadn’t printed out the directions in reverse, so I was left trying to figure out how to reverse them in real time. I always have a problem with this task, but most of the time, I deny that it’s an issue at all. This time, the denial resulted in my getting lost less than a mile from my house. I needed to stop and think very hard, several different times, about how to read my instructions backward so as to find my way home.

Since I cannot create a mental picture of any route I’ve ever taken, all I could do was to work with the printed text. By the time I was close to my house, I’d finally figured it out. I realized that all I had to do was to start from the bottom, reverse each direction (changing Left to Right and Right to Left), and apply it to the street name in the step above it. Here’s how it looks for the first two turns in a homeward direction (reading from the bottom up):

7:  Turn LEFT onto REDWOOD ST.

                 LEFT
8:  Turn RIGHT onto HAZEL ST REDWOOD ST.

                RIGHT
9:  Turn LEFT onto LILAC DR  HAZEL ST.

I was am kind of exceedingly proud of myself over this bit of magic.  I deeply envy admire those who can hold the image of a route in their minds, but for someone as directionally challenged as I am, another strategy is a necessity. Happening upon the logic of how to reverse course was an incredible relief.

© 2009 by Rachel Cohen-Rottenberg

11 comments

Creating a Support Network

August 3, 2009 Rachel Aging, Anxiety, Communication, Community, Disabilities, Marriage

Several months ago, my husband made plans for a ten-day trip to California. The first weekend was to be a reunion of old friends and family, followed by a trip to Yosemite with his daughter, and ending with a big celebration of his aunt’s 90th birthday. Since I don’t like flying, I don’t do groups well, and I was absent on the day they passed out the “adventure” gene, my husband was going to make the trip alone.

This plan was nothing new. Throughout our relationship, Bob has made at least one ten-day trip to California each year. As for me, I have always had a very hard time when he goes away for so long. Before I knew that I was autistic, I’d always thought I had lots of “issues” to resolve, and that I needed to “work on myself,” so that I, too, might be able to make these trips and act like a “normal” person. Even when it became clear that I wasn’t really all that interested in going, I wanted to work on handling my emotions better—both for my own peace of mind and for Bob’s ability to enjoy a guilt-free trip. So, I worked on not crying inconsolably every time he left, on getting together with friends, and on otherwise distracting myself from the fear, trembling, and massive anxiety I felt at being left on my own for ten days.

This year, everything changed. In the early part of the summer, I began to actively resist the idea of Bob going to California at all. At this point in my life, I don’t feel inclined to just “suck it up” and “work on my issues” when I have a strong feeling about something. I figure that I’m an intelligent, kind, good-hearted person and that if I’m feeling resistance, fear, sadness, or any other emotion, I should maybe, um, respect it. It’s never all that easy, because I have all kinds of conflicting emotions, which lead to all kinds of conflicting desires. As far as Bob’s trips go, I always find myself caught in the same dilemma: I want Bob to enjoy travelling, and I want him to stay here with me.

We’ve been negotiating on this trip for a couple of months. At one point, we discussed the idea of his going for a shorter period of time. A shorter trip seemed like a great solution. It seemed logical, it seemed manageable, and it seemed abundantly fair. At least, it looked that way in my mind, that part of me that likes to work out rational solutions without considering their impact on the rest of my being. In this case, while my mind was saying, “That sounds okay,” everything else in me was saying, “No, no, no. No compromise will work. Forget it.” It was a full-out, visceral feeling that I couldn’t shake. Nor could I shake the feeling of guilt at being so inflexible.

After much struggle, I finally realized why I was feeling so strongly about Bob staying here. He takes care of so many things that I can no longer do that it feels really frightening to have him be away for so long. Of course, with some advanced planning, we might have taken care of the logistical details, but it really wasn’t just the trip to California. It’s the fact that if Bob should leave the planet before I do, I have absolutely no support network set up to take care of all the things that he does. What if he went to California and didn’t come back? Where would I be?

I finally began to understand why I’d always felt like a basket case when Bob took a long trip.  Even before I knew I was autistic, even when I was still gamely trying to do everything that “normal” people do, it was clear that I did not function well when Bob was away. The autism diagnosis only brought the reality of mid-life autistic burnout into the light of day.

To make a long story short, Bob decided to cancel his trip to California this year. We’ve decided that, apart from his trips to see his dad in New York, he won’t take another long trip until we get a support strategy figured out and make sure that it works. I so much want Bob to be able to travel and have a great time with his family and friends, but we’re only at the beginning of dealing with my autism. Right now, I feel as though I’m out on the open seas without a life raft, and I can’t have my partner taking a ten-day journey to anywhere until we get a survival plan in place.

Given my love for lists, I took on the task of making a list of all the things that I need a support network to help me do:

1. Housecleaning. (This problem is solved. We’ve hired a great person who comes in once a week to clean our house.)
2.  Driving my daughter where she needs to go. (This problem will take care of itself fairly soon. When my daughter gets her driver’s license, she will also get my car.)
3. Food shopping. (My new headset might allow me to go food shopping on my own. I plan to try it in the near future, and I dearly hope that it works.)
4. Cooking meals.
5. Running outdoor errands.
6. Going to doctor, therapy, or hospital appointments.
7. Making telephone calls.
8. Advocating for myself with the health insurance company, the doctor, the cable repair person, and the rest of humanity.
9. Keeping track of the finances for our household and for a small non-profit that we run.
10. Spending time with friends.

As I looked over this list, I had some significant realizations:

1. Bob needs a respite from being my sole support person. At this point, he’s not complaining, but when he’s sick with a cold, I feel like hell asking him to do the things I can’t do. Setting up a support network will allow him to get a break when he needs one, and I won’t feel so inclined toward a meltdown when what I want to do conflicts with what I can do.

2. I supported myself for thirty years, including seven years as the sole breadwinner when my daughter was small. I kept up with every penny, wrote every check, and worked out every budget. Since Bob and I have been married, he has taken on these tasks, and it has been a great relief for me.

However, as a result, I have found myself in the dark about our income, our expenses, and all the bills that come into this house. So, yesterday, Bob and I sat down and he showed me every last bill, every last expense, every last account, and every last penny of income. I made a list of everything he showed me. Now that everything is down on paper, the whole process of keeping the house going feels more manageable to me. I know that I could take care of the finances myself if I had to. In addition, I was able to organize our financial papers so that I can find the information when I need it.

From this point on, I plan to stay more involved in our financial life. Doing so has already felt very empowering.

3. One of my all-time greatest fears is growing old alone and being put into a hospital or nursing home. Given that I have no idea how well I’ll be functioning as I age, it makes sense that I find someone who can advocate for me if I outlive Bob—someone who will have power of attorney with my best interests at heart. I can think of several friends I would entrust with the job, so I’m going to consult a lawyer about all the issues involved.

4. As much as I hesitate to enter any bureaucratic process, I am considering applying for Social Security disability. I know people who have done so (and succeeded), and the key was having a knowledgeable, supportive person involved in the process from beginning to end. Even in the best situation, the process is very onerous, but if I’m going to get assistance with basic tasks from someone other than Bob, I’d like to help pay for it.

5. I have some wonderful friends, but I avoid spending time with them because I know how easily I get overloaded. My therapist suggested that I talk to my friends about it. Since I feel completely ill-equipped to begin such a conversation, I’m going to explore the issue further with him. If I have friends that I know I can see, it will help with my fears of being left alone.

And how does my husband feel about cancelling his trip to California? Sad, disappointed, but not angry. He is starting to face the fact that the autism is real and pervasive. He’s starting to see the situation as it really is, not as we once dreamed it would be. We’ve both been crying a lot, but we’re crying together, and that makes all the difference.

© 2009 by Rachel Cohen-Rottenberg

15 comments

Back at the Thrift Store

July 30, 2009 Rachel Anxiety, Communication, Community, Sensory Processing Issues, Spectrum Pride, Volunteer Work

My plan for this week was to meet with my new Aspie friend on Monday and to try working at the thrift store on Thursday. To make this plan workable, I began implementing my new strategy of giving myself two days at home to rest and recharge after I spend time with people outside my family. Monday’s visit went swimmingly, so after two days to myself, I decided to give the thrift store a try.

I was just as anxious this morning as I was before Monday’s visit. I gave myself plenty of time to have a workout and a good breakfast so that I could be as relaxed as my Aspie nervous system would allow. I now own a Thumper massager, and Bob used it on my back before we went to the store. I wanted Bob to walk me there and to do some errands nearby so that I’d get to see him once or twice during my shift. Having a much-loved and familiar person there seemed very important for re-entering the life of the store, and his presence was very reassuring (as always).

The reception that I got from the staff was WONDERFUL. Several people gave me hugs, and everyone was very happy to see me. I asked for something quiet to do, perhaps in the linen department? The housewares manager pointed to four baskets of linens and said, ”I just finished pricing these. You can put them out if you like.”  Heaven!

I worked in the linen section for an hour and forty-five minutes, organizing everything to my heart’s content. There were all kinds of things to put out on the shelves: towels, sheets, pillowcases, tablecloths, runners, placemats, napkins, potholders, curtains, pillows, blankets, and quilts. In addition to putting out the new items, I organized all the items that were already out, which was no small task. You never realize how messy linen departments get until you’re the person who straightens it all up. Because I like organizing just about anything, I had a wonderful time at it and was very proud of how everything looked when I was done.

My only annoyance had to do with my Sonic Defender earplugs. They’re made to block out loud noise but still allow for normal conversation. Usually, I can wear them when I’m out and hear Bob pretty clearly. In the store, however, in order to hear anyone properly, I had to take one of the earplugs out every time. I didn’t mind taking the earplug out so much as getting it back in, which is always a bit of a chore. It’s possible that I know Bob’s voice so well that I hear it better than anyone else’s when we’re out in the world; it’s also possible that he knows to speak clearly when I’m wearing the earplugs.

I’m going to have to come up with a better plan for ear protection. I might just use my foam earplugs and then wear a small stereo headset unattached to an iPod. The foam earplugs are very simple to put in or take out, and with the headphones on, people will think I’m listening to music. They’ll either decide not to talk to me at all, or they’ll tap me on the shoulder to get my attention. Either way is fine with me. The store is a relatively quiet place, but there are lots of conversations that would distract and overload me without ear protection.

I’m in the midst of doing some research into whether I can get a pair of hearing aids that actually deamplify sound. It seems to me that if you can put something into your ear and turn up the volume, you ought to be able to put something into your ear to turn it down. I’ll let you all know if I discover anything interesting along these lines.

Apart from my frustration with the earplugs, my time at the store today was a great success. I was so happy to be there and to see everyone. And I’m very glad that I am officially “out” to the staff. I feel very comfortable with people knowing that I’m autistic. I don’t feel pressured to be a certain sort of person anymore, I don’t mind being awkward, and I don’t have any inclination to fake being NT. Why on EARTH would I want to do THAT? Being autistic is so interesting!

© 2009 by Rachel Cohen-Rottenberg

17 comments

OMG! OMG! OMG! I’m Making a Friend!

July 27, 2009 Rachel Anxiety, Belonging, Communication, Friendship, Spectrum Pride, Women and AS

I spent an hour today with my local Aspie counterpart. She’s so nice, and she enjoys so many of the things that I enjoy!

Before she came to my house, my worst fear was that we wouldn’t connect, and that the hour would pass very slowly. As it turned out, when she walked up to my porch and started talking to Bob and me, I liked her immediately. Between giving her a tour of the house and talking about all the stuff that was beautiful and interesting to both of us, the time flew by, and it was time for her to go. It felt as though she’d been here for just five minutes.

In our house, we have a small library (which is actually a wide hallway framed with bookshelves all around). She had mentioned how much she loves seeing people’s books and had wanted to spend some time looking at ours. We didn’t get to spend too much time in the library today, so the next time she comes over, I’m going to let her explore the books undisturbed by any narration about my house. I lent her a copy of the book I had written (about my elderly friend), and we hugged before she left. Hugs!

I was very keyed up about this visit beforehand. Then, once she got here, and I became aware how short a visit it would be, I felt rushed. When that happens, I sometimes have a wee bit of trouble finding the words I want to say. So, I’m not sure if what I wanted to say made its way out of my mouth in any kind of coherent fashion, but who cares? We had fun.

To think that I had been feeling so insecure about meeting her! Last night, I was feeling that whatever social skills I used to have were NT emulation skills, and that they were gone. What would I use instead? I talked with Bob about my last seven years of nearly unabated social failure, all of which seemed to begin around the same time that my relationship with him started. I used to think that I hadn’t made any friends in the last place we lived because people had blamed me for Bob’s departure from the synagogue. I was very angry about it for a long time. All of those social failures have been psyching me out in the present, even in a new town in which people have been welcoming and friendly. I didn’t know whether I could make a friend anymore. I didn’t know whether I knew how, or whether I had the courage to try.

But now, I’m seeing my “social failures” in a whole new light. I’m realizing that the reason for my social difficulties was that my NT emulation skills went “bye-bye” when Bob and I got together seven years ago. For most of my adult life, I’d been in relationships in which I’d needed to somehow “improve.” I was always the one with the “issues,” the one who was never quite right, the one whose ”stuff” was always getting in the way. When I got together with Bob, I found someone who loves me just as I am. In fact, Bob loves things about me that had driven other people crazy.

So, when we first got together, I started to relax and to take another look at myself. I started to think, “Hey, I’m really all right just as I am!” And then, in my Aspie innocence, I assumed that the whole world would be equally excited at this unforeseen and utterly miraculous transformation. I was loved! I was fine! And I was ready to show the world who I really was! In my excitement, I started acting like an honest, straightforward, tell-it-like-it-is Aspie—even before I knew I was an Aspie! I mean, how brilliant is THAT? 

Not very. The results in the neuro-typical world were not good. Not good at all. My life became a constant series of culture clashes, as though I were speaking French in a country where no one had ever heard of France. But French was so natural to me. What was wrong with these people?

Oops.

I’ve finally realized that because of my relationship with Bob, my NT emulation skills have been absent for several years without my really knowing it. Much of that time, I’ve been leaping into all sorts of situations, trying to do the NT dance, and ending up feeling alone and alienated. Once I got diagnosed, I began to worry about all the problems I’d have once I gave up all pretense of being NT. Until last night, it hadn’t occurred to me that my NT emulation skills have been at the bottom of a landfill in Franklin County for several years.

And yet, miracle of miracles, my relationship with Bob continues to grow and thrive. What does that tell me? Can I actually be who I am? Can I actually make friends? Can I actually feel like a human being again?

I think so. I hope so.

© 2009 by Rachel Cohen-Rottenberg

20 comments

Places to Go and People to See

July 26, 2009 Rachel Anxiety, Autism-Literate Therapists, Communication, Friendship, Sensory Processing Issues, Women and AS

As much as I love my loft and my house, I am feeling increasingly frustrated with not being able to spend much time out in the world. I like being out and about, and I also like being able to go places with Bob. Often, I want nothing more than to be at home for days at a time, living in blissful solitude, but sometimes, I wouldn’t mind an hour or two in the beautiful, interesting, friendly town in which I live.

As always, my primary barrier to going out into the world is sound. Auditory overload can happen immediately if the environment is too noisy. It’s easy enough to stay away from places that I know will be too much for me (like the bead store with the Very Loud Music), but it’s harder when I know that the environment might go from quiet to noisy while I’m there. I’d love to go out to eat at a restaurant, but even if it’s quiet when I get there, I can’t count on it staying that way. Any loud noise feels like an assault on my nervous system—an assault I can’t see coming—and when it happens, the result is intense and immediate.

Needless to say, this problem has been causing me some anxiety about going out, and it’s been difficult for me to strategize my way around it. However, Bob and I have come up with an idea. We’re putting together a list of a) places that we can definitely go, b) places that we will need to check out to see whether they will work for us, and c) places we absolutely cannot go under any circumstances. For the purposes of posting the list on my blog, I’m leaving out the names of local businesses because I don’t want to pan them; lots of people like going to them, and the local economy needs all the help it can get right now. So, here is the list:

Places We Can Definitely Go
The library
Small, local bookstores
Quiet neighborhood streets (for walking)
A small, discount grocery store in town
A drive-in movie

Places to Try
The local movie theatre
The art supplies store
The stationary store
The local Thai and Indian restaurants
The co-op (in the early morning hours)
The shop that sells Indian textiles

Places That are Definitely Off Limits
The bead store
Restaurants with TVs and/or bars
Shops, cafes, or restaurants with loud music or crowded eating areas
The local pharmacy (a very busy, crowded, noisy place)

My biggest challenge at the moment is figuring out how to try places that might work without getting overloaded. It may not be possible to avoid overload when we’re working on our Places to Try list, so we will have to schedule these attempts when I have a couple of days to recover. We also have to make a commitment to leaving immediately if the situation becomes aversive. I find it very hard to leave when I’m in a situation that seems to be working and then suddenly stops working: the music gets too loud, children get tired and start crying, a noisy party of eight walks in halfway through my dinner, and so on. I get stubborn and refuse to believe that the situation is not going to be salvageable. Beneath the stubbornness are sadness and disappointment: I was having a good time and now, through no fault of my own, I have to leave. But I can’t let the sadness and disappointment be obstacles anymore or I’ll be like a scared rabbit, unable to move.

As for going to the movie theatre, there are two issues: one is the sheer volume of the music and dialogue, and the other is the issue of people talking during the movie. I cannot stand it when people talk during a movie. So, I’m figuring that if Bob and I sit in the very back row of the theatre (where people don’t usually sit), I won’t able to hear people talking because they will be in front of me. It’s worth a try to see what happens.

I’ve also figured out more strategies about reducing sound when I’m out. In addition to my Sonic Defender ear plugs, I’ve gotten a noise-reduction headset at the local hardware store. It’s not electronic; it’s something that people wear when running power tools or mowing the lawn. With the earplugs, it works pretty well. I look weird wearing it out in the world, but given that when I’m walking, I really want to be left alone, the headset is an especially good idea. It also might work for going to the movies.

Along with wanting to go places, I’ve also found myself wanting to be around people. Of course, determining who to hang out with is even harder than determining where I can go. People who do not know that I’m autistic can easily overload me. A couple of weeks ago, I decided to start the process of figuring out how to be around people by finding an autism-literate therapist in town. Lo and behold, I’ve already succeeded! His office is just a ten-minute walk from my house, and my insurance will pay for the sessions. Halleluyah.

Bob and I went to see the therapist on Friday, and I felt very comfortable with him. The session was great. He asked whether eye contact was difficult for me. When I said yes, he said something like, “I want to thank you for making eye contact with me, knowing how hard it is for you. You don’t have to make eye contact if you’d rather not.” That was a good sign. When I told him how tired I was getting by talking back and forth, he said, “If you decide to come in to see me again, feel free to write down beforehand what’s going on for you and bring it to the session. Then, I’ll read it, and we won’t have to talk much if you don’t want to.” That was another good sign.

Finally, he asked about my friends. I told him that I have friends, though not in town, and that I get so easily overloaded that I resist getting together with them, even though I know they love and support me. He suggested that I talk to my friends and tell them what I need so that I can make space in the friendship to be myself and to take care of my sensory needs. What a concept! I hardly know how to begin that conversation, so I’m hoping that he can give me some guidance and support on the whole subject.

Speaking of friends, I’m meeting my new potential local Aspie friend tomorrow, and I’m alternately very excited and very nervous. She’s going to come over to my house for an hour. I very deliberately avoided doing what I really wanted to do, which was to say, “Come over for the entire afternoon!” I need to learn pacing and to set time limits with my neurology in mind. What my head and my heart want to do is one thing; what my nervous system can do is another.

Anyway, she’ll come over tomorrow, I’ll give her a tour of the house (all first-time guests get a free tour of the house), and then we’ll play cards.  We’ve been corresponding by email for a couple of weeks, so we know what our sensitivities are, and what works and what doesn’t work for each of us. On that basis alone, I’m feeling very hopeful about the visit. After all, how many opportunities do I get to say, “I can’t listen to music and talk at the same time” without feeling like I’m either freaky or a bore? I can say it to my daughter and to my husband, and now I’ve been able to say it to another Aspie in town. It’s a good start.

While I’ve been getting ready for the visit, I’ve been thinking more on the subject of friendship, wondering why I haven’t made new friends for several years. I’ve been feeling pretty psyched out by that fact, and not surprisingly, my self-confidence as far as friends go has been in negative numbers for awhile. But I think I’m beginning to get it figured out. Part of the problem is that I can’t do the things that friends usually do together: talk for a couple of hours, go to concerts, parties, restaurants, dances, cafes, etc. Between not being able to a) talk for a couple of hours without getting worn out and b) go to many places without getting overloaded, I just haven’t been able to figure out what I would actually do with a friend were I to make one.

It’s getting a little clearer now. I can get together with a friend and play a game: a card game, Scrabble, anything will do. I can go to a bookstore with a friend and hang out without the pressure of having to interact. I can also just invite a friend to my house and do some kind of  “parallel play.” Just having someone here who might like to read while I’m writing could be very nice. Of course, I will need to find other like-minded people for these kinds of activities, but at least I’m starting to define what I can actually do, rather than what I can’t do.

As far as tomorrow goes, send out good thoughts. I’m really proud of myself for not having bailed out on the whole thing, which is my usual response to anxiety. Right now, I don’t care whether I’m feeling happy or sad, tired or rested, confident or insecure. I’m going to meet this woman, be myself, and welcome her into my home!

© 2009 by Rachel Cohen-Rottenberg

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