Archive for February 26, 2009

When Things Go Wrong: A Postscript

Many thanks to everyone for giving me such great support about handling the situation at work. I thought I’d bring you up to date on the latest developments.

I went in early today and spoke with the volunteer coordinator. We had a very good conversation. I told her what had happened and that there seemed to be a communication problem between the staff and the volunteer who works with the books. Since I’d been asked to organize the books by a manager, I was really shocked to find my work undone. My main concern was that I understand the other volunteer’s boundaries so that I can help without getting in the way of her process. I don’t want to step on her toes, and I don’t want her to step on mine. The volunteer coordinator asked me to show her the shelves, to describe what I’d done, and to explain what had changed. She needed the visual and thanked me for the information. She’s a very good communicator, so I feel reassured that I will get some clarification about how to proceed.

I also used our meeting to have a conversation about my sensory processing issues. It seemed time to let her know what works for me and what doesn’t. I told her that working with most of the books was really out of the question anyway, because when I have to stand on a chair to get books from a high shelf and then come down and work with books on a low shelf, I get very dizzy. I could work with the children’s books, though, because they’re on low shelves and I can just sit on the floor with them. I also told her about being overloaded by visual and auditory stimuli, and that I need to limit my time to two hours or I start to get past my comfort zone.

Finally, I told her that I would enjoy having a task that I can focus on from week to week, whether it be working with children’s books, jewelry, or any other aspect of the store. There are volunteers who work only on one thing, and there are others who just do whatever is needed. So far, I’ve been coming in and asking “What can I do for you today?” I don’t mind continuing that to some degree, but I’m finding the need to focus on something in particular from week to week just to feel a sense of routine. I told her that whatever I do, I’d like to continue working with the customers, because I really love that and would not want to end up in a room doing a task by myself.

All in all, the conversation went very well. I felt extremely vulnerable about bringing up the sensory processing issues, and even got a little disoriented talking about them, but I’m glad I did. I felt very liberated by having done it, and I felt that I could be myself more freely than before, so that was a great unexpected outcome. I didn’t mention having Asperger’s because I figured I’d given her enough to think about for one day. And anyway, I do pretty well socially most of the time. It’s a non-conformist kind of place with artists and otherwise interesting folks, so I’m not seen as weird by any means.

So there you have it. Thanks again for your support. You are all amazing!

© 2009 by Rachel Cohen-Rottenberg

When Things Go Wrong

Something difficult happened in the midst of my volunteer job yesterday. I got very emotional about it at the time, but I’m okay about it now. After looking at the situation and talking with my husband this morning, I’ve figured out a lot about how Asperger’s affects me and why I get so emotional.

Some background: Last Thursday, while volunteering at the store, I worked on organizing the shelves that hold newly arrived books. We have many other bookshelves that are already categorized and labelled, but the “New Arrivals” shelves weren’t. There were perhaps 200 books, and most were simply shelved wherever there was room. I offered to organize the books, and the manager in charge said, “Go ahead. Bend those shelves to your will.” So I did. I figured out what categories the books should go into, and I labelled the shelves accordingly.

It wasn’t an easy task. First of all, there was the necessity of getting books from the higher shelves and the lower shelves. With my gravitational insecurity, it was very difficult for me to go up and down like that, but I managed. Then, the book area is next to the children’s area. Around 3:00 pm, lots of kids came in, and they were rather loud and frenetic. Finally, I stayed an hour later than usual, breaking my own rule about avoiding sensory overload by limiting my shifts to 2 hours each.

I knew that I should have stopped at 2 hours, but the job wasn’t done yet, you know? It is next to impossible for me to stop doing something before it’s done, especially when I’m organizing something. If I leave the task when it’s two-thirds done, it is not organized. There is still chaos afoot. At least, that’s how my Aspie brain sees it.

So, I got home, and I was a bit of a basket case. I can’t remember exactly what I was feeling, but when my husband got home, I said, “I need to watch a TV show, and you need to hold me really, really tight.” In the course of the evening, my husband gently reminded me that when I overstay my welcome anywhere in the world, the result is usually not good.

Anyway, I recovered, and I had a wonderful feeling about the job I’d done. My husband went to the store on Friday, and when he came home, he gave me all sorts of compliments about the bookshelves. When I got to work yesterday, the manager also gave me good feedback. She told me I could do some more reorganizing in the book section if I wanted to.

So I went over to the book section and what did I see? The labels that I had put up were all gone and the books were all mixed up.

I kid you not.

I asked the manager what had happened. She said she wasn’t sure. There is a volunteer who takes care of new books on Sunday (when the store is closed), and people pretty much communicate with her via notes. So, it was most likely the volunteer who had undone my work. I don’t know why she undid everything. Perhaps she felt that I’d intruded on her territory. Apparently, she’s been doing the books for a long time. Or maybe my logic didn’t work for her. (I know it’s hard to believe, but stay with me here.)

When I saw all my work undone, I got really teary. I knew I was going to start crying, so I went into the bathroom and sobbed for a little while. Then, I went back into the store, did some other tasks, helped a customer find something she needed (which was a welcome break from my personal drama), and went home.

This morning, I was feeling so sad that I didn’t want to go back to the store anymore. I knew I would go back, but the feeling was there. My husband and I discussed it, and he said, “I see a pattern here. You find yourself in a situation that really works. People love what you bring to the place, and you love being there. Everything is wonderful until, one day, something goes wrong. And when it goes wrong, you leave.”

He was absolutely right.

So then I did what I usually do when he is absolutely right. I revert to my old habit of searching my psyche for what deep, dark reason I must have for perpetuating this kind of pattern. Was this a childhood issue resurfacing? Am I just immature? I was really stuck. And then, my dear husband said, “It’s like what you were saying on your blog yesterday. You stand at the border of a group. You figure out the rules. You enter the group when you’re reasonably sure you’ve got the rules all figured out. And then, at some point, you inevitably realize that you don’t have the rules all figured out. When that happens, you feel completely alienated, and you leave.”

He’s good, isn’t he? And he says all these things in such a non-judgmental voice, too.

So what have I learned about my Asperger’s from this little scenario?

1. I expect people to think like I do. When I rearranged the books into a logical order, I assumed that everyone would be happy. I didn’t allow for the fact that I might be stepping on someone’s toes, or that another person might find my sense of order confining, or that anyone would undo my work without checking to see what was going on.

2. Because I don’t intuitively understand the rules, I have to do a lot of thinking about them. When I’m faced with the fact that I missed something, I feel so scared, alienated, and upset that I want to cry. I suddenly remember that I don’t perceive things like other people do, which leads me to the conclusion that I’m not important and that I don’t belong. I feel like a little, lost kid watching all the grown-ups go about their lives while I’m crying over something that everyone else would consider trivial.

3. If I keep working when I know I’m getting overloaded, or if I keep working in defiance of my gravitational insecurity, nature will see to it that something falls apart. Sometimes, that’s the only way I get the message.

Just about every time that I’ve gotten upset and left a place, it was because the rules changed in some sort of painful way. In some situations, there was actual harm done to me or to the people I love. When I wasn’t able to mend the harm, I couldn’t stay and pretend that nothing had happened. So I left. But in this case, no lasting harm was done, so there is no reason to leave.

You will be glad to know that I went back to work today. It was a little crowded. I got tired easily and felt very out of sync, but that’s okay. It happens. Tomorrow is another day.

© 2009 by Rachel Cohen-Rottenberg

Women, Girls, and Asperger’s Syndrome

A few months ago, I participated in a very spirited online discussion with a number of other women about whether female Aspies present differently than male Aspies. The more I learned about women’s experiences, the more I realized that the diagnostic criteria and the resulting research are based mainly on male models of thought and behavior. As a woman, I fit the relevant criteria, but they don’t explain the whole of me.

For example, Simon Baron-Cohen posits the “extreme male brain theory” to explain Asperger’s Syndrome. He employs a dichotomy between the empathizing female brain and the systematizing male brain. In Baron-Cohen’s theory, Aspies have extreme versions of the systematizing male brain. It’s as though the good professor has never considered the idea that systematizing and empathizing could exist in extreme measure in the same brain. His theory leaves out those of us who both systematize and empathize in non-normative ways.

I was becoming very frustrated by these kinds of ideas when I discovered Tony Attwood’s The Complete Guide to Asperger’s Syndrome. His book was the first one by a male researcher that made any sense to me as an Aspie woman.

Attwood begins his discussion of girls and Asperger’s Syndrome by questioning why the ratio of diagnosed male to female Aspies is 4:1. He suggests that the reason for this disparity is not that there are more male than female Aspies, but that many female Aspies do not appear to meet the clinical criteria. In a clinician’s office, female Aspies can often hold a reciprocal conversation, make eye contact, and use facial expressions appropriate to the subject matter. In other words, female Aspies can appear to have no social impairments.

As always, the problem is that many professionals do not look more deeply into whether we learn such skills intuitively. Attwood very aptly notes that we do not. Rather, we employ a number of intellectual strategies to learn social skills or to mask the lack of them.

Some male Aspies use the very same strategies. In fact, it would be difficult to find an adult Aspie, male or female, who has not employed at least some of these strategies. For the present, however, I will concentrate on Attwood’s insights about the social skills of female Aspies and why we often do not seem to meet the diagnostic criteria.

1. Careful observation of social situations
Girls with Asperger’s Syndrome often appear to be passive bystanders in group interactions. However, we are anything but passive. We spend our time actively observing others in a social group and determining what to do. As Attwood writes: “An example of a camouflaging strategy is to conceal confusion when playing with peers by politely declining invitations to join in until sure of what to do, so as not to make a conspicuous social error. The strategy is to wait, observe carefully, and only participate when sure what to do by imitating what the children have done previously (Attwood 46).”

I have always been the person on the outside of the social bubble, watching. As a child, I would look in, figure out the rules of the game, and decide whether I could successfully fit in. I would only enter a group if I felt reasonably sure of the rules of engagement. If the rules changed, I became quite disoriented and would leave the group very quickly (if I weren’t simply paralyzed by confusion, in which case I might remain until the group broke up).

One positive outcome of a lifetime of observation is that I became a very good facilitator in my last job. From all my years of watching people interact, I’d become well versed in observing process, so I could facilitate our weekly meetings with ease. I would notice who was quiet and hadn’t spoken up yet, who was talking too much, and who was trying to speak but couldn’t get a word in edgewise. I could step in and make room for each person to speak, and when the conversation was losing its focus, I could lead people back very easily. It was one of the best roles that anyone has ever given me.

2. Taking on the persona of a socially skilled peer
Many Aspie girls become very accomplished mimics. As Attwood writes: “The child adopts a social role and script, basing her persona on the characteristics of someone who would be reasonably socially skilled in the situation, and using intellectual abilities rather than intuition to determine what to say or do (Attwood 46).”

As I’ve written before, I chose a different girl each year of high school and tried to be like her. In creating a false persona, I was able to mask much of my confusion and insecurity. I spent a great deal of time observing the girl I wanted to become, thinking everything out, and getting my script in place. It was quite painful to shoehorn myself into another girl’s personality, but it allowed me to interact with other people, which felt much safer than enduring the ridicule that came with being alone.

3. Being quiet and following instructions
Despite the fact that I can do a monologue as well as the next Aspie, my main coping strategy as a child in school was to be quiet. Attwood writes that many of us use “strategies to avoid active participation in class proceedings, such as being well-behaved and polite, thus being left alone by teachers and peers (Attwood, 47).”

I went to a very conservative school that rewarded politeness. So long as I was well behaved and answered the questions the teacher asked, I didn’t get myself into any kind of trouble.

4. Developing protective friendships
Girls with Asperger’s tend to be more loyal in friendships than typical girls, and often develop friendships with someone who is safe and maternal. Attwood writes:

“A girl with Asperger’s syndrome…is more likely than boys to develop a close friendship with someone who demonstrates a maternal attachment to this socially naive but ‘safe’ girl. These characteristics reduce the likelihood of being identified as having one of the main diagnostic criteria for Asperger’s syndrome, namely a failure to develop peer relationships. With girls, it is not a failure but a qualitative difference in this ability. The girl’s problems with social understanding may only become conspicuous when her friend and mentor moves to another school (Attwood 47).”

In my senior year of high school, I became best friends with a girl who was quite maternal and protective of me. She was very talkative and funny, and I allowed myself to get swept up by her energy. She was also an outsider and was thrilled to make friends with me. We were nearly inseparable. But when we went off to different colleges, I was a complete basket case. I showed up at college with absolutely no idea about how to interact with a new group of people. My freshman year roommate was anything but maternal and protective, and I made a number of social faux pas on which she was only too happy to capitalize.

It wasn’t a good year, especially after I flooded the entire first floor of my dorm by attempting to flush tampons down the toilet. An act of passive aggression, you say? Very likely.

5. Becoming little philosphers
While Aspie boys tend to become little professors, capable of holding forth with an astonishing array of facts, Aspie girls tend to become little philosophers who think long and deeply about human interaction. As Attwood writes: “From an early age, girls with Asperger’s syndrome have applied their cognitive skills to analyse social interactions and are more likely than boys…to discuss the inconsistencies in social conventions and their thoughts on social events (Attwood, 47).”

Analyzing social situations and human motivation is still one of my favorite pastimes. I can’t say that I always understand what makes people tick, but I’m very interested in the question nonetheless. The fact that female Aspies tend to observe, analyse, and critique social interactions may appear to indicate that we have no social impairments and feel more comfortable with people than with objects. It seems to me, however, that the only people interested in observing, analysing, and critiquing social interactions for free would be people who can’t intuitively grasp them.

6. Watching soap operas
My friends, I’m about to let you in on my deepest, darkest secret. When I was a girl, I watched soap operas with my mother every winter afternoon. We watched daytime dramas called The Edge of Night, The Secret Storm, and Another World.

There. Now I’ve said it. I feel so much better.

Actually, this special interest is not unusual for Aspie girls. Attwood writes: “The unfolding drama provides a voyeuristic insight into interpersonal relationships…The activity also provides a ‘safe’ vantage point from which to observe and absorb knowledge on friendships and more intimate relationships (Attwood 181-182).”

Because of the melodramatic aspect of soap operas, I can’t say that I learned a lot about how to form intimate relationships. What I did learn, however, was very useful to me: People make messes of their lives because they won’t say anything directly. In every single episode of every single soap opera, people suffered unnecessarily because someone, somewhere, was hiding something. It was absolutely excruciating.

I used to ask my mother why people didn’t just come out and say who they loved or whose baby they were having. Her response was always the same: ”Well, if they did THAT, there wouldn’t be a STORY!”

If anything, watching soap operas confirmed in me the value of Aspie directness.

For those who are Aspie women, or who are raising Aspie girls, I hope this information will be a useful starting point for understanding more about how we navigate our world.

© 2009 by Rachel Cohen-Rottenberg

Weighted Blankets and Other Joys

On Monday afternoon, I got my weighted blanket and weighted vest in the mail. They came at the perfect time. My husband was visiting his father for a couple of days, and I was missing him. I needed some hugs, so I was looking forward to seeing how comforting the blanket and vest would be.

The blanket is from The Original Bean Blanket Company and weighs fifteen pounds. It’s twin-sized and consists of a very soft blue fleece material with beans sewn evenly throughout. Here’s a picture from the company website at www.thehugshack.com:

 
















The vest came from the OTVest company. It’s a dungaree vest with the weights attached to the inside of the shoulder area by velcro strips. It weighs four pounds. Here are some photos from the company website at www.otvest.com/index.html:

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Most weighted vests have both shoulder weights and weights in the body of the vest. I ordered one of those as well and should be getting it soon. I’m interested in seeing the difference in the effects of the design.

Since the blanket and vest arrived, some of my daily patterns have started changing. For instance, when I get home from work, my senses usually feel pretty overloaded, but I rarely know what to do with myself. I have certain protocols: I empty my backpack, put away anything I bought, gather up the receipts, and put my cell phone on the end table. But I’m still quite unfocused and at a loss as to how to proceed. I generally end up on the computer or eating something, even though I don’t really want to read about world news and I’m not hungry at all.

When I got home from working at the store on Monday, I completely bypassed the computer and the food and got right under my new blanket. I immediately noticed how reassuring it was to have the weight on me. Then, very quickly, I began to register how over-stimulated my nervous system felt. I kept having the feeling of energy pulsating through me, like a recurrent wave. I could feel how hard my nervous system had been working and what a pitch of activity it’s at most of the time.

After awhile, though, I could feel myself starting to relax. I’ve tried all kinds of meditation and other methods for relaxing, but I was experiencing a much deeper kind of relaxation. It wasn’t just my mind relaxing or my muscles unclenching. It was my nervous system calming itself down.

I can’t remember how long I stayed under the blanket. It might have been a half hour. When I finally got up, I had a very odd feeling of being very refreshed and extremely tired. I felt calm and ready to focus on putting some dinner together, but I also felt how deeply tired I was. It showed me how hard I work every day just to deal with sensory phenomena and the world of other people. I used to think that only my mind was working hard, but now I realize that it’s basically all of me.

I went to sleep that night under the blanket and my quilt, and miracle of miracles, got a good night’s sleep. I seem to remember waking up in the middle of the night, but the next thing I knew, it was Tuesday morning. The only down side was that I woke up with a migraine that required two tablets of Imitrex to knock out. I had a similar experience the next night: a great night’s sleep, followed by a migraine. It’s possible that the migraines resulted from the decrease in stress. I’ve found that when I’m stressed out, I don’t get migraines. When I’m debriefing from the stress, they arrive. Sometimes, they arrive out of the blue, but this time, it seemed like a reaction to bringing down the stress level.

Today, I worked for a couple of hours at the local food co-op and then had to see my doctor about getting an insurance referral to the OT. By the time I got home, it was snowing, but I was feeling pretty good. I had a snack and worked out, and then decided to try out the blanket again. I was relaxing pretty nicely when my husband got home. We chatted about his trip and his dad, and then he began unpacking. I continued relaxing under the blanket. Then I woke up at 7:30 pm—two hours later.

I was amazed. I rarely fall asleep in the middle of the day or in the early evening. If I do, it’s because I’m so sleep deprived and overloaded that I feel as heavy as a rock. But today, I felt great when I got home and I wasn’t sleep deprived at all. The simple truth was that my nervous system was exhausted, as it is every day. After sleeping under the blanket for two hours, I woke up groggier than I’ve felt since I was a chronically insomniatic kid. My husband wanted to go out for dinner or a movie, but I couldn’t imagine having the energy to put my boots on, much less go out in the snow. So we had dinner together at home as I slowly returned to consciousness.

As for the OTVest, I’m wearing it as I write this post, and I love it. It puts very gentle pressure on my shoulders and feels very soothing. I’m not sure what I’ll do when the warm weather comes. The vest and weights will be too heavy. Fortunately, the weights detach as a unit, so I can put them on my shoulders without the vest. I’ll probably do that at home as the weather improves.

Great stuff, eh? Too bad I had to wait 50 years to experience it, but hey, it’s better late than never!

© 2009 by Rachel Cohen-Rottenberg

Stimming

Autism Wiki defines stimming as “a repetitive body movement that self-stimulates one or more senses in a regulated manner.” Stimming can involve one or more of the five senses, the vestibular system (which controls balance, movement, and spatial orientation), and the proprioceptive system (which provides information about the relative positions of the parts of the body).

Stimming is generally an unconscious nervous system response. In psychiatric terms, it is a kind of stereotypy, a continuous movement without apparent purpose (although it certainly serves many not-so-apparent purposes). It is one of the symptoms of autism listed in the DSM-IV, although many autistic people do not stim.

Common Forms of Stimming
There are many different types of stimming. The following list provides some examples:

  • Visual: Blinking, looking at fingers, staring at a light, lining up or spinning objects
  • Auditory: Snapping fingers, humming, grunting, echolalia (repeating words spoken by another person), repeating rote phrases
  • Tactile: Scratching, touching objects, biting nails, twisting hair
  • Taste: Licking objects or placing them in mouth
  • Smell: Smelling one’s own body, objects, or other people
  • Vestibular: Rocking (back and forth or from side to side), spinning, pacing, jumping
  • Proprioceptive: Wrapping arms inside shirts, hand flapping, toe walking, tapping fingers

Some also count perseveration (our Aspie fixation on one or more special interests) as a form of stimming.

My Childhood Stims
For me, stimming is a mode of self-soothing. It helps to calm my senses and acts as a barrier to stimulation from the outside world.

When I first started learning about Asperger’s and saw references to stimming, I couldn’t believe my eyes. So many of the behaviors were ones that I had manifested as a child and some had even come along with me into adulthood. My childhood home was constantly overstimulating: loud voices, poor boundaries, erratic behavior, and a TV that came on at 6 am and went off at 11 pm. So I needed a lot of soothing.

Here are some of my childhood stims:

  • I would lie in bed and squint at the light coming from the ceiling fixture in the center of my room. I enjoyed seeing all the little rays of light that seemed to shoot out in all directions.
  • I loved lining up objects, such as different types of candy, dolls, coins, and baseball cards.
  • I liked spinning the wheels on my Tonka trucks far more than I enjoyed playing with the trucks themselves. I still like looking at bright spinning things.
  • I constantly twisted my hair by winding it around my fingers. It used to drive my parents up the wall. One of the recurrent imperatives from my childhood was “Stop playing with your hair!” But I never gave it up. I mainly loved the softness of my hair and how the ends felt against the tips of my fingers.
  • Remember those big fat green number 2 pencils from grammar school? The kind where you could see the lead on the bottom because there was no eraser? Every day in class, I used to chew on the ends of those pencils and lick the lead on the bottom. Between the lead-based paint and the pencil lead, it’s amazing that I have any brain cells left.
  • I always enjoyed wrapping my arms and hands inside my shirt or sweater. It made me feel very secure. I do a more adult version of this stim now by putting my hands in my pockets when I’m out walking. When I wear a skirt or jacket without pockets, my poor arms and hands feel forlorn and just don’t know what to do with themselves. It makes me very nervous.
  • I loved to tap my fingers and do complex patterns, alternating fingers and counting in different sequences. This stim is another that pops up in my adult life from time to time.

My Adult Stims
Here are my adult stims, most of which I do only at home:

  • Toe walking and hand flapping. I have no memory of doing either of these stims as a child, although I can vividly recall the day my principal told me to start walking by putting my heel down first. Clearly, I was walking toe first, but I soon stopped. (I was a very compliant child.)
  • Twisting my hair (even though it’s pretty short now).
  • Counting the buttons on the TV remote control by tapping them lightly with my fingers in different patterns, pressing my fingers against the sides of each one, and figuring out how many even sets there are. (This stim drives my husband nuts when we’re watching a movie. He generally takes away the remote control and holds my hand instead.)
  • Eating foods with soothing textures, like almond butter, peanut butter, and tahini. I’ve been noticing lately that it’s not the flavor I’m after with these foods, but the texture. It’s the tactile experience that makes the stim work.
  • Riding my bicycle on a stationary stand. I like the repetitive circular motion.
  • Looking at a “magic wand” with lights that spin when I push a button.
  • Organizing objects of any kind, any time, anywhere.

The last time I saw my OT, she mentioned that engaging the proprioceptive system includes putting different sorts of pressure on the joints. The right amount of pressure is very soothing. For this reason, weighted blankets, weighted vests, and other objects are often very calming to autistic people. I asked her whether toe-walking is soothing because of the pressure it puts on the joints, and she said, yes, that toe-walking puts more pressure on the joints per square inch than walking heel first. Hand flapping is also calming for much the same reason.

On the advice of my OT, I’ve been wearing a weight on each of my ankles, and I’m finding it very calming and grounding. I’ve also ordered a weighted blanket and a weighted vest. I’ll post more about using them once they’ve come in the mail and I’ve had a chance to try them out.

© 2009 by Rachel Cohen-Rottenberg

I’d Love To, But I Can’t

Go contra-dancing, that is.

I have some friends who love contra-dancing and go nearly every Saturday night. So I went with them one night, just to try it out. 

At the time, I didn’t know about being an Aspie, and so I didn’t know what a disaster the evening would be. Neither, of course, did my friends, who just wanted me to have a good time. In the light of my diagnosis and sensory assessment, it’s quite funny to think about all the things that went wrong that night.

When I first arrived, I walked into a large room in which people of all ages were standing around, waiting for something to begin.

At one end of the large, crowded room, there was a live band warming up, playing amplified fiddle and keyboard music. The music, while beautiful, was quite loud, as were the voices of all the people trying to be heard above it. 

And then, the dance began. I found, to my horror, that I actually had to touch people I didn’t know. Worse yet, they had to touch me. Lightly, of course. Did I mention that light touch brings out my karate skills? Be reassured, I didn’t use them, but only because my partner unexpectedly spun me around

Fortunately, one of my friends was still nearby. “Help!” I shouted. ”The room is spinning!”

Because she is a kind-hearted and practical person, my friend paused a moment to give me some sound advice: “You won’t get dizzy if you look directly into the eyes of your partner. Go ahead. Try it.” 

What? Look into the eyes of a stranger? I might be giving off nonverbals that would get me into trouble in the parking lot. Remember Thelma and Louise? These are the things I worry about.

I didn’t have much time to worry, however, because a few moments later, everyone had to change partners. Change! I was just getting used to one total stranger, and now we’re onto the next one, and I had to look into his eyes, too.

And did I mention that I didn’t know any of the dance steps? My friends had told me that everyone was very nice to beginners, and that I should keep trying and watch what people do. I’d catch on eventually, they said. The problem, of course, is that I cannot learn a blessed thing by watching people do it.

So I stood there, totally confused, until another kind-hearted person came up to me and said, “It’s okay. Just listen to the directions.”

Listen to the directions? You mean, the verbal directions? Without a pen and paper for taking notes? With the amplified music playing, and all the people talking and laughing, how can I possibly hear the directions? Even if I could, I’d need a video camera, a set of printed instructions, a diagram, and lots of quiet time at home to get it all figured out.  But, it was too late for any of that now, wasn’t it?

Finally, one of my friends shouted, “If you’re feeling overwhelmed, why don’t you just sit down and listen to the music?” That seemed an excellent idea. So I sat down, and I watched a small village dancing round and round in an enclosed space with amplified fiddle and keyboard music.  Everyone was looking as though they were having so much fun. I wished I could be like them. I wondered how it was possible that I could be getting dizzy watching them, when they weren’t getting dizzy dancing around and around.

After an hour, I was gone. I mean, I was still in the room, but I was gone. And then it occurred to me: I have car keys and my car is outside. I think I can even remember what it looks like.

So, I said my goodbyes, to the disappointment of my friends, and I staggered outside into the cold night air. It was blessedly quiet. I got into my car, breathed a sigh of relief, and took the slow route home. I’d never enjoyed the quiet so much.

For many people, contra-dancing is fun. If your senses don’t get overloaded by visual, auditory, and tactile stimuli, it’s fun. If you can learn dance steps just by watching them, and if you can follow verbal directions, it’s great fun. If you can make eye contact and don’t mind spinning around, it’s even more fun. And if you don’t find crowds profoundly disorienting, and if you can filter out background noise, it’s wonderfully fun.

Unfortunately, I can’t do any of those things. So when people ask me whether I’d like to go contra-dancing, I just say, “I’d love to, but I can’t.”   

© 2009 by Rachel Cohen-Rottenberg

Empathic Sensitivity

On Sunday, I spent the day researching and writing an article for our local monthly paper. I was writing about the Israeli-Palestinian conflict, so I spent several hours reading various articles and trying to put my ideas into a reasonable format.

By the end of the day, I was deep into a nightmare. I had read and written about the bloodshed in Gaza, the Holocaust, anti-Semitism, and the tragedy of the Israeli-Palestinian conflict. I saw everything from every angle. It just about paralyzed me. My whole nervous sytem was in an uproar. My mind kept saying, “Go work out, or go to a movie, or something, ” but I couldn’t figure out how to make the transition. How could I just go and work out when I’d been looking at endless war? I was literally sick to my stomach.

Finally, my husband said, “Let’s watch Sense and Sensibility on Masterpiece Classics tonight.” So we did, and it was just the right thing. It helped me calm down significantly. Nothing like watching 18th-century British aristocrats to take you well outside of your own life.

When I told the OT about this experience, she nearly started to cry. She said, “This is part of your sensitivity to the world. You can stand in everyone’s shoes. It’s a gift, but you have to balance it by reading about something positive and uplifting, too.”

I have read pieces by other autistics about this gift, and it seems to be very much connected to our hyper-sensitivities in general.  I wonder if others of you have had this empathic experience and how it feels to you. I’ve been doing this type of thing all my life, but I’m only just beginning to understand what a powerful blow it is to my mind and body.

© 2009 by Rachel Cohen-Rottenberg

My Sensory Assessment

Today, I met with my OT to discuss the results of my sensory assessment. Her report was full of very helpful information. Things that have mystified me all my life began to make sense. 

I’ll share the highlights.

Here is a list of the assessment tools she used:

Interview
Developmental/Sensory History Questionnaire
Adolescent/Adult Sensory Profile (Brown & Dunn)
Quick Neurological Screening Test-II (QNST-II)
Gravitational Insecurity Screening Tool (May-Benson, AJOT 2007)
Subtests from: PEERAMID-2 (Levine)
Ocular Motor Control Screening
Clinical Observations of gross motor, fine motor, and balance skills

In her report, she defined a number of terms that were helpful in understanding how my sensory processing system works. I’ll use her definitions as I discuss how they relate to my particular situation.

Sensory Processing
“Sensory processing is the continual process of the brain filtering, interpreting and organizing sensory information from the environment and from our body. We use this information to determine what is going on in our environment (external stimuli) and in our body (internal stimuli) and how to respond in just the right way for the situation. When effective, we can filter and prioritize incoming information and determine if it should be noticed or disregarded and respond in an adaptive, purposeful manner.”

Needless to say, I have difficulties with “filtering, interpreting, and organizing sensory information.”

Sensory Processing Disorder and Sensory Modulation Disorder
“Sensory Processing Disorder (SPD) is the impaired ability to interpret, organize and make sense of various simultaneous sensations entering the brain. The brain may not filter the stimuli or it may misinterpret the stimuli resulting in various reactions including fight, flight, freeze and/or fright responses. Sensory processing disorders have subtypes: sensory modulation disorder (sensory over and under responsive types and sensory seeking), sensory discrimination, and sensory-based motor disorders.” (Note: SPD is not yet an official diagnosis, though many OTs are working very hard to make sure that it appears in the DSM-V.)

“Sensory modulation refers to one’s responses to stimuli. When one is not able to regulate the intensity and types of responses to stimuli (internal or external), this is called a sensory modulation disorder. One may over respond, under respond to stimuli and/or seek stimuli.”

The assessment shows that I have sensory modulation disorder of the sensory over-responsivity (SOR) type. In other words, my nervous system is highly sensitive to visual, auditory, and tactile stimuli, as well as to movement. No surprises there.


Dyspraxia
Dyspraxia is “a deficit in the ability to plan, sequence, and execute a novel motor task.”

The evaluation concludes that I have mild dyspraxia when doing fine motor tasks, such as knitting, and that I have moderate dyspraxia when doing gross motor tasks, such as karate.

To learn to knit, I used the instructions in a beginner’s knitting book. I found it difficult to figure out from the drawings how to hold the needles, how to place the yarn on them, and how to do the various stitches. It was hard to translate from the picture in the book to what was happening in my hands. Fortunately, I am a tenacious person, so I just kept reading the instructions and trying each task until I got the desired result.

Once I’ve learned a skill, I can repeat it. I sometimes get out of practice, but after a few tries and mistakes, I generally remember what to do.

As far as learning karate goes, I had a somewhat more difficult time. Fortunately, I learned karate from some very patient senseis who respected the way that I figure things out. For example, I was not able to learn a kata (a sequence of moves) just by watching and copying my sensei, as most people did. The process I used was comparable to the one I use to translate visual information from a picture book. I learned the katas by doing the following tasks:

1. Film someone doing the kata (or buy a video if I felt too shy to ask).

2. Watch the video at home and write down all the steps in sequence in a list.

3. Create a mnemonic for remembering when certain sequences are repeated or changed.

4. Diagram the directions in which I needed to move on a piece of paper, with items in the dojo noted so that I could orient myself properly. (All katas require that you face in each of the four directions. Sometimes sequences are repeated in each direction, sometimes sequences are slightly altered, and sometimes, new sequences are added.)

5. Practice the form at home while imagining that I was in the dojo.

When my sensei asked me to perform the kata while facing in a direction different from the one I had in my mind, I quietly panicked. For example, if when I practiced a kata, I imagined beginning the form by facing the window, I would become very agitated if my sensei asked me to demonstrate the form by starting in the direction of the door. Sometimes, I could do it, but it took a lot of practice to get the kata in my muscle memory, and I never lost my anxiety about having to begin in a different direction.

Gravitational Insecurity
From our discussion today, I learned that gravitational insecurity denotes a condition in which one cannot determine where one’s head is in relation to the earth. A person with gravitational insecurity is afraid of having his or her feet off the ground, and of having his or her head tipped backward. 

The evaluation concludes that I have severe gravitational insecurity, and that I rely to a very great extent on my vision to orient myself in space. I am particularly averse to any kind of rotational movement. I’ll let the report speak for itself here:

“A gravitational insecurity assessment was administered. She attempted and completed the following tasks: jumping, jumping over a line, swinging laterally on a platform swing, rocking herself laterally on a peanut-shaped physioball, stepping on and off a tilt board with little hesitation or cues and little to no emotional responses. Rachel quickly becomes dizzy when she stands on a chair and jumps from a chair with her eyes closed, and attempts to stand in tandem with her eyes closed. She was able to lie supine on a physioball and look up at the ceiling for a moment before needing to kneel and then lie on the floor due to severe dizziness. A weighted blanket was placed over her for 4 minutes as a grounding technique so that she could recover from this severe dizziness. Rachel stated that she became “nauseous” watching this therapist demonstrate rolling prone on the physioball and this task was omitted from the assessment assuming that her response would be aversive.”

Yes, I got nauseous just watching the OT tip her head backward!

Understanding the concept of gravitational insecurity explains a world of difficulties I’ve had with very simple tasks. For example, I generally resist any activity that entails having to move up or down, because when my head is in motion, I have a very difficult time orienting myself as to where the ground is. So, for example, I don’t like swinging up and down on a playground swing, but I can swing from side to side on a swing that I can stand on. When I swing from side to side, my head is in the same plane with the rest of my body and my feet do not move up or down.

Another example: As I write this post, the sun is going down, and I am going to have to get up and turn the light on. There are actually times when I sit here in the dark, using only the light from my screen to read the keys, because getting over to the light switch feels like such a production. I’m sitting on a futon on the floor, and the light switch is on the wall to my left, about two feet away. I can’t reach it from where I am, so my usual strategy is to move over toward it along the futon, staying in a sitting position, with my head remaining as still as possible. I then try to reach the light switch without getting up. It’s physically impossible for me to reach it from a sitting position, but that doesn’t stop me from trying. Because I’m writing about it right now, I’m conscious of the impossibility factor, and I’m aware that I’m going to have to find some other way to turn the light switch on.

Excuse me for a moment……

There, now it’s on. Guess how I did it? I carefully moved over onto my knees, raised my arm up, turned on the light, and then returned to a sitting position with a feeling of great relief. The entire time, my head remained in the same plane as the rest of my body. I made sure of it.

There are a number of other tasks that I resist doing because of gravitational insecurity: taking out pots or dishes from an upper or lower cabinet; emptying a dishrack and putting things away in an upper or lower cabinet; putting on my winter boots (because the task entails sitting, lifting my foot into the air, putting on the boot, and then crouching over my boot with my head toward the floor as I tie the laces); reaching up for my winter coat (because the peg is fairly high); taking showers (bath tubs are slippery and I have to close my eyes while I’m washing my hair); and other very basic things.

I told the OT that all my life, I’ve just assumed I was lazy. She said, no, I’m not lazy at all. To the contrary: For me to do these simple tasks is very hard work. It doesn’t look like it on the outside, but that’s what’s happening inside.

Amazing, isn’t it?

The report also made suggestions for treatment. I am going to begin seeing the OT once a week as soon as I can. I’ll talk more about various treatments as I go through this process.

© 2009 by Rachel Cohen-Rottenberg

Aspies and Friendship, Part Four

Since yesterday, I’ve been giving a lot of thought to the friends I made in my time of troubles. I’m realizing that there were more than two of them. I hadn’t thought to include the others because they had been my husband’s friends before they were mine. I didn’t make these friends on my own, but I need to honor them nonetheless. 

Allen and Lee are long-time friends of my husband, and they were unfailingly supportive to us when so many people were not. They have always treated me with love and respect.

There is also my friend Robin, a neighbor at the top of our hill in western Massachusetts. She had been a neighbor and friend of my husband for 20 years, but she and I forged a friendship of our own. She was also my book designer for the Williams project and it was a joy to work together. Even though we are no longer neighbors, we are still in contact. Whenever we meet, it’s always good to see her.

And then there were people who tried to befriend me, but I was too low and too overwhelmed to know how to respond. I honor them as well.

There was more light in the darkness than I realized.

And now, to the more recent past, and more thoughts on Aspies and friendship.

Last winter, I faced a number of truths that left me in despair. I could never feel at home in the place we were living. The house had too much history in it from my husband’s past. The community had not opened up to welcome me. And my self-esteem was declining rapidly.

After many conversations and many tears, my husband and I decided that we needed to move. We’d always loved Vermont, so we thought we’d give it a try. I am so glad we did. It’s one of the best changes I’ve ever made. We moved in March to a small apartment and then found a house this past November.

I can’t say I’ve made any friends here. At least, not yet. All of my difficulties with friendships remain. But I have discovered something that is much more important to me than friendship. I have discovered that what I need most is friendliness.

I know that we Aspies often have a difficult time distinguishing between the two. I have often found myself in the situation of being treated in a friendly way, and then making the assumption that the person was going to become my friend. When things didn’t work out according to plan, I reacted with shock, anger, and frustration.

I just don’t understand all the steps that most people take from friendliness to friendship. Or perhaps, I just don’t have the patience to learn them. The friendships I have didn’t materialize in a slow and measured way. I became close with my friends very quickly.

At this point, I am content with the friends I have. Most don’t live nearby, but we can always reach out to each other and I know they are there. These days, I require a good deal of quiet and solitude. I still have difficulty with social outings and I don’t have a lot of energy for making new friends. My Aspieness, combined with my entrance into mid-life, seems to be keeping me in a holding pattern. If I run into a kindred soul and we become friends, that will be wonderful, but I’m not longing for it in the way I once was.

I do know one thing for certain, however: I need friendliness on a regular basis. Fortunately, the town I live in is a very friendly place. Most people smile back when I smile at them. They joke around with me. They seem happy to be living here, and they seem happy to have a newcomer show up. 

In my last community, the joke used to be that if you lived there for 25 years, you graduated from being an outsider to becoming a newcomer. I should have known at that moment that the place was not for me.

So, while I still have my struggles like any other Aspie, I am much happier now. I have places to go where people know me and appreciate me. I can limit my time in the world so that I have time to rest and recharge. And if I’m getting cabin fever, I can walk out my door and in two minutes, I can see what the rest of the world is up to.

It’s a good life.  I’m very thankful for it.

© 2009 by Rachel Cohen-Rottenberg

Aspies and Friendship: Part Three

Now that I’ve discussed my difficulties with friendships, I’ll spend some time talking about my successes.

During my five-year stint of social disasters, I made two very good friends. Their presence in my life is proof of the maxim that as far as friends are concerned, quality is what counts, not quantity. Not surprisingly, both friendships developed in the contexts in which I’m most comfortable: being a mother, and working on a creative project.

One of these friends is a woman named Sue. When we first met, I was new in the area and looking for other homeschoolers for my daughter to meet. Someone in town had given my husband Sue’s phone number and told him that she’d love to hear from us. I have a lot of anxiety about talking on the phone to new people, so I put off calling Sue for days. I need not have worried. When I finally called her, we hit it off immediately and had a great conversation. Our daughters became good friends, and so did we. We talked about things that mattered: our kids, our childhoods, our views of the world. Sometimes, months would pass between conversations, but we’d always pick up right where we’d left off, as though no time had passed at all. Her friendship was a bright light in a very difficult time.

The other friend I made during this time was a man named Francis. He was 88 when I met him, a shy and generous man who disliked crowds and felt most comfortable in the outdoors. He was a retired farmer with an amazing number of great stories and an even more impressive number of old photographs. In the course of our visits, I began recording his stories. At home, I transcribed the stories, scanned many of his photographs, and ultimately wrote a book about his life called A Sense of Place: The Story of the Williams Family Farm. The book was published in September of 2007. Unfortunately, Francis did not live to see the final version, but he did see a first draft and never stopped marveling over the fact that someone would want to write a book about him. He died on February 3, 2007 at the age of 91.

The following is a eulogy that I gave at Francis’ funeral in early February, 2007. Apart from the book, it’s the best statement I have of how precious our friendship was to me.

For Francis Russell Williams, July 17, 1915–February 3, 2007

As many of you know, I’ve written a book about Francis and his stories of grow­ing up and raising his family on the farm in Apple Valley. The book will be pub­lished in September, but I’d like to read a modified excerpt from it today in order share some memories of Francis and what he meant to me.

I first met Francis when I became a Meals on Wheels driver in 2003. He had come into the program shortly after Margaret died. His grief and exhaustion were so great that he had stopped eating and was slowly withdrawing into him­self. His family hoped that having someone deliver food each day would bring Francis back into life. So, in the early months of 2003, I began arriving at Francis’ home each Thursday and Friday, placing his meal on the counter, giving him a friendly greeting, and getting on my way.

At least, I wanted to be getting on my way. But Francis always wanted to tell me a story.

In fact, he always wanted to tell me the same story.

During those first months, Francis told me the story of the day that Margaret had died. She had wanted to die at home, but he had taken her to the hospital, unaware that she was in her last hours, and she had died there. He was so afflicted by his inability to grant her last wish that he told me the story over and over, as though by repeating it, he could somehow find his way out of the pain.

In those early days, I found it very difficult to stand there in the face of Francis’ pain, when I could do nothing at all to take it away. Standing there and doing nothing were nearly impossible for me in any situation. I was always rushing here and there, doing several things at once, and rarely stopping to look around me. But, thankfully, Francis opened the door to a much healthier way of being in the world.

It happened on a Friday afternoon in the early spring. That day, I once again made my way to Francis’ door. Gathering up his lunch, I walked up the steps to the porch, opened the door, and said hello.

Something had changed. Francis was standing at the kitchen window, looking intently outside. As I put his lunch on the counter, he said, “Look at what I’m see­ing here.” I looked out the window and saw nothing out of the ordinary at all. Francis was the final person on my route, and I was tired, and I was hungry. My mind was racing with all the things I needed to do, and I was in a big rush to do them.

But for some reason, I didn’t leave. I simply asked, “What is it?”

Very slowly, without taking his eyes away from the window, Francis said, “There’s a little bird building a nest in that birdhouse.”

“What birdhouse?”

“The one right across from us.”

“Where?”

“Across the driveway.”

I finally saw it. It was a tiny little wooden birdhouse with a tiny little hole in the front. From where we were standing, it was impossible to see inside it. How could Francis possibly know that a bird was building a nest in there? I couldn’t understand it.

But Francis just kept standing there, looking at the little birdhouse, with a look on his face I had never seen before. His eyes were bright and full of expectation. So I kept standing there, too, looking at the birdhouse.

But I couldn’t keep quiet. “How do you know there’s a bird building a nest there?” I asked.

“There’s a little bird that comes to the birdhouse with one little twig. It goes into the birdhouse for a few seconds, and then flies away to get another twig.”

“Really?”

“I’ve been watching him do that for the past 15 minutes. He’s not there now, but he’ll be back.”

“Really?”

“Just wait.”

“Really?”

He stopped answering, and I finally stopped talking. I may even have stopped thinking. In any case, I was definitely standing there doing nothing—unless you count waiting breathlessly for the appearance of a little bird with a little twig.

And then, there he was, holding a thin twig that was longer than he was, and somehow getting both the twig and himself inside that little birdhouse. He stayed for only a few seconds, long enough to lay down the twig before flying off for another one.

Of course, I just had to stay to watch the bird do it all over again. It took a little while, maybe 30 seconds, for the little bird to return with the little twig and disap­pear inside the little birdhouse again. And when I saw him fly off in search of another twig, I could hardly contain my excitement.

We stood together at the window, waiting patiently for the bird to come back a few more times before I took my leave of Francis that day. We had looked out of the window together for only five minutes, but those five minutes were a time of pure delight. There I was, standing there and doing nothing, and that was enough.

At the end of 2003, I left the Meals on Wheels route and began seeing Francis for an afternoon each week. Sometimes, we just sat quietly and watched the crows fly among the trees in his yard. He was extremely attentive to the natural world outside his window, and he would often point out the subtle changes taking place in the woods behind his house. Little by little, I learned to be attentive–to stop, to watch, and to listen. Slowly but surely, I began to see and to enjoy the world in a way that had always eluded me. Francis didn’t teach me anything by intention. He was just being himself, and he brought me along with him.

And, as I was to find, there were other gifts. Francis told wonderful stories–of his life on the farm, of his schooldays, of his parents and grandparents and children, of the Apple Valley community he loved and remembered so well. He hadn’t lived on the farm since 1963, and yet he remembered all the roads from his childhood–how to get to the Hawley pasture with the dry cows in the summer, how to get to Depot Road to bring the milk to the train with his father. His stories were sometimes sad, at times hilarious, and always interesting.

Even as Francis struggled against the infirmities of mind and body, he was never harsh or impatient with me. He never asked for more than I had the energy to give. He was always kind, always gentle, and he always appreciated whatever I did, no matter how small. His home became a place in which I felt completely welcomed, completely accepted, and completely at ease. Among all the rea­sons that I will miss visiting my friend Francis, I will miss the simple ease of being with him most of all.

Francis was a wonderful man. I feel very blessed that he was my friend.

© 2009 by Rachel Cohen-Rottenberg