Archive for January 31, 2009

More Fiber Art

A few weeks ago, I signed up to take a sweater class at the local yarn store. At the last minute, I realized that I would have a hard time concentrating in a class while learning a new skill. I emailed the store owner (another woman named Rachel) and explained a little bit about my sensory integration difficulties. I asked whether I could arrange some private lessons with her instead of taking the class. She was happy to do it and said she wouldn’t charge me more than I’d already paid in advance.

So I chose a sweater pattern from a book I have at home and went to the store to buy some yarn. I ended up with eight skeins of a beautiful rust-colored Malabrigo yarn from Uruguay. Not only did I get the yarn, but Rachel also sat me down, unwound three of the skeins for me, and helped me get started on the sweater itself.

I would like to say that the sweater is done, but I’ve gone off in several different directions since I got the yarn. I’ve started the sweater, but I’ve also made two more scarves, a hat, and my very first pair of mittens. 

Using more of the yarn that my husband spun from the fleece of our late sheep Sophie, I made myself a simple scarf to go with my first color stranding hat:














I then took the wool from an old hat that I’d made a couple of years back and turned it into a torquoise scarf to go with my two teal and purple hats:














I hadn’t made a hat for awhile, so I decided to reaquaint myself with circular needles. I ended up making a chenille hat from some scraps of yarn I got at a local thrift store. Here’s the hat, along with a scarf that I made a couple of years ago:














After I’d finished the scarves and the hat, my daughter asked me to make her a pair of mittens. I was going to ask Rachel to teach me, but I decided to try a pattern I have at home and see whether I could figure it out. Lo and behold, I did!

 














These are the first knitted items I’ve ever made entirely on double-pointed needles. I used some specialty yarn I’d picked up at the store where I volunteer. It was very fuzzy, which made it difficult to work with. If I dropped a stitch, for example, it was very hard to see where it had gone, so I had to improvise. On the positive side, the yarn was so fuzzy that most of my mistakes blended right in.

So much for my latest creations! Since I lost my original quilt photos when I ported to the new template, I thought I’d post pictures of the two quilts I’ve made. With all the snow on the ground, it’s been very nice to have them in the house.














I’ll post a photo of the sweater when it’s done. Hopefully, I’ll have the sweater finished before spring!

© 2009 by Rachel Cohen-Rottenberg

Sensory Self-Defense

I learned something from my occupational therapist about sensory defensiveness that has proved very helpful.

Last week, before I went in for my appointment, my OT called to get some background information. At one point in the call, she asked me which senses get highly overloaded. I told her that I have a lot of trouble with visual and auditory stimuli, and that I also find light touch very difficult. For example, when my husband comes over to me while I’m writing and gently kisses me on the head, I feel like I want to execute a self-defense block and shout “Stop!” It’s the light touch combined with the fact that I also happen to be using another sense at the time that puts me over the top.

In describing the feelings of anger that rise inside me, I told my OT that I used to say to myself, “Girl, where is this anger coming from? You’ve got a lot of issues.” But now, I realize that it’s just my nervous system that can’t handle light touch or too much sensory input at once.

She very emphatically agreed, saying, “Yes, that’s right. It’s not psychological. It’s your nervous system defending itself.”

My nervous system defending itself.

Wow. That’s exactly right.

This morning, I had an experience in which, for the first time, I was able to watch this process and see the way it works. I was sitting down to breakfast and pouring water out of a Brita pitcher into a glass. I hadn’t realized that my husband had just filled the top of the pitcher with water, and that the water hadn’t gone through the filter yet. So, when I went to pour the water into the glass, all the unfiltered water in the top of the pitcher spilled all over the table.

I jumped backward, uttered an expletive, and got very upset. I found myself about to go upstairs and get angry at my husband, when I stopped and looked at what had happened. I’d been so startled by seeing the water spill unexpectedly, and by getting cold water on myself, that my nervous system was completely agitated. I thought, “Wow, I get it. This anger is just my nervous system defending itself.”

After cleaning up the spill, I walked upstairs and decided to talk with my husband about it. I said, “Honey, I think perhaps my nonverbal cue of leaving the top off the Brita pitcher when I first pour water in wasn’t direct enough. So, could you start leaving the top off the pitcher when the water hasn’t gone through the filter yet?  Or maybe leave the top on sideways, as a signal? I just spilled the water all over the table.” So we talked about it a bit and came up with some strategies, and that was very nice.

But I was still quite agitated. I was flapping my hands all over the place and lifting myself up and down on the balls of my feet. Before I left the room, I realized that I didn’t want my husband to think I was agitated because of him. So I said, “I want you to understand. I’m not angry at you at all. It may sound like it, but that’s because my nervous system is in overdrive. It’s not your fault. It’s just going to take a little while for me to wind down.” And then I went back to the kitchen and had breakfast.

What a change! In the past, a moment like that would have triggered an angry outburst. If it had happened when I was already overloaded and at my wit’s end, it might have turned into a meltdown.

So now I know that when I feel myself get angry over these small things, it’s no one’s fault. It’s just my nervous system defending itself.  I can just watch the feeling and listen to what it’s telling me. In this case, my nervous system was saying, “Hey! That was really unexpected, wet, cold, and messy. Please, clean up the spill, get me warm, and try to avoid this particular mishap again, because I really, really don’t like it.”

Imagine. If every Aspie in the world could verbalize that experience, and if other people could understand what it means. What a different experience of life that would be for everyone!

© 2009 by Rachel Cohen-Rottenberg

Meltdowns

Tonight, an Aspie friend wrote and asked me whether I have problems with meltdowns. It was a timely question, because yesterday, I had seen a meltdown coming and had managed to diffuse it. So I thought I’d share my experience.

Yesterday morning, I had an appointment with an occupational therapist for a sensory integration assessment. I had had some trouble locating an OT who works with adults, but I had finally found one. When she offered me her first available appointment, I grabbed it.

That was my first mistake. The OT’s office is an hour’s drive from home, and the appointment was in the morning. I would have to get up earlier than usual, and my morning routine would be completely interrupted. Somehow, all those changes to my routine seemed inconsequential. Ironically, I was so focused on wanting the assessment that I lost sight of how my nervous system might fit into the equation.

On the positive side, I was realistic enough to know that when I got home, I’d need a lot of time to rest and recharge. So in the days preceding the assessment, I discussed the situation with my husband. We both agreed that I’d be good for very little when I got back, and that he’d do the afternoon carpooling to pick up my daughter.

It was a good plan. It truly was. But like many plans, it didn’t quite work out.

The assessment lasted 2½ hours and went very well, but it was very tiring. During the hour-long drive home, I comforted myself with thoughts of how nice it would be to hibernate in my loft for a few hours and do something to soothe my overloaded nervous system. Sometimes, my plans are so vivid that I forget that they haven’t happened yet.

Anyway, I got home, and my husband was feeling really sick. He’d been feeling lousy for about a week, and it had all caught up with him. He’d gone to the doctor and needed me to bring a prescription for antibiotics to the pharmacy. He also said he wasn’t sure whether he could do the carpooling.

This kind of situation is meltdown territory for me.

I was completely overloaded, and I needed to recharge, but then life demanded something else of me—something else that I deeply wanted to be able to do.

So I just stood there, paralyzed.

And then the moment arrived, the moment at which I always go to war against myself, the moment that begins the meltdown. I’d never seen it so clearly before. The key to the meltdown is the moment that I become aware of the dissonance between what my heart wants me to do and what I am actually able to do. When that moment arrives, I feel like an utter failure.

As I looked at my husband feeling so sick, my first impulse was to pick up his prescription, make him tea, pick up my daughter, make him some food, tend to his needs, and let him get some rest. After all, those are the normal things that other people can do on half a night’s sleep while talking on their cell phones, right?

That was the impulse of my heart.

But then my nervous system started saying “Please. Please, don’t push it. Please, I need to rest. Really. I don’t want to set off any alarms. I’m just saying…”

So, recognizing that I was getting caught between two competing aims, I was able to verbalize something about my distress. I said, “I’m very overloaded and I don’t know how much more I can do.” I didn’t say it quite as calmly as it sounds now, but believe me, I was trying.

Because my husband is a very patient and solution-oriented person, he didn’t mind talking about it, and we worked it out. He rested, and then he felt a bit better. He drove to the bus stop, and I went to the pharmacy. When he left, he said that he would like to have his prescription when he got home, so that he could just take it and rest. I agreed.

Problem solved.

Almost.

I went to the pharmacy, gave the nice man at the counter the prescription, and found out that it would take an hour to get it filled. I nearly started to cry. I did not want to go back out in an hour. It was freezing cold and I was so tired. I wanted to climb into my hobbit hole and be left alone. But I also wanted to get my husband his prescription before he got home. After all, he was doing the driving. I was just walking to the pharmacy.

But I knew that I was spent. I couldn’t stay out for an hour, and I couldn’t go back out into the world one more time. So I called him. I’m not happy to say that in my pain, I left a somewhat pissed off message on his cell phone, as though he were the cause of the problem. It went something like this: “WHY are you not picking up your phone? Are you there? Well, anyway, I just found out that your prescription is going to take an HOUR to fill and I CANNOT go back to the pharmacy, so if you want to get your prescription, YOU’RE going to have to figure something else out, so CALL me when you get this. Okay. Bye.”

I spent the next ten minutes in a state of high anger (by myself) and then realized that I didn’t need to be angry at anyone. I was just overloaded. Then I started to cry, which was a vast improvement, let me tell you. When my husband called me back, I apologized, and he said he understood and that it wasn’t a big deal. My daughter drove to the pharmacy, and they got his prescription.

Problem solved. Really.

Except of course, that I still wish I could power through this and do what others find relatively easy. Intellectually, I realize that while my husband was sick yesterday, I am dealing with a disability every day. On a good day, the AS feels like a very interesting and pleasantly eccentric way of being. On a bad day, it feels like a very limiting disability.

My husband does not feel deprived because of the AS. He loves me, and I love him. We find lots of ways to work around my limits so that I can do what I do well. We both benefit from the process of strategizing, and he seems very happy with the outcome, even on a difficult day.

As for me, I’m working to accept myself as I am and to know that I have many other ways of loving.

This morning, we were both feeling sick, and we were having a quiet day at home. At one point, I went into the living room and said, “You know, I feel so sick today, but then I see you, and it doesn’t really matter. It makes me happy just to look at you and to know that you’re here.”

He smiled and said, “I know. I feel just the same way about you.”

© 2009 by Rachel Cohen-Rottenberg

Inability to Visualize: More on Why I Love Picture Books

Last week, I found a used children’s book called How It Works: Funny Bones and Other Body Parts, written by Anita Ganeri, and illustrated by Steve Fricker and John Holder. The book is written for third or fourth graders. I was attracted to it because there are basic systems in the human body that I have never been able to understand. I wasn’t interested in complex, high-level information. I was interested in things like the difference between a muscle and a tendon. So I bought the book.

It’s wonderful. Each section consists of detailed drawings that cover two pages. The book presents each body system by using analogies to familiar objects. For example, in the section that illustrates how different parts of the brain function, a compass symbolizes the ability to orient oneself in space, and a megaphone denotes the ability to understand speech.

I began reading the book the night I bought it, and I sailed through the sections on hair and skin, bone and muscles, the five senses, the brain, and the respiratory system. I was enjoying myself immensely until I got a few minutes into the part on the circulatory system. Very soon, I began to feel very, very dense.

I will try to describe why. On the picture of a heart are the following easy-to-read chunks of text:

Arteries are the blood vessels that take oxygen from the heart to the rest of the body.

Veins are the blood vessels that bring carbon dioxide to the heart from the rest of the body.

So far, so good. Arteries take blood away from the heart, and veins bring blood to the heart. Very nice. I can grasp that. But then, there is another chunk of text, and this is what it says:

Arteries take carbon dioxide from the heart to the lungs. Veins bring oxygen to the heart from the lungs.

At this point, my poor brain began to twist itself into knots and lots of grey matter started dissolving. In a nutshell, here is the problem:

1) On the picture, the text says that arteries take oxygen away from the heart. But then, the other text says that arteries take carbon dioxide away from the heart. To the lungs. (How did the lungs get there, anyway?)

2) On the picture, the text says that veins bring carbon dioxide to the heart. But then, the other text says that veins bring oxygen to the heart. From the lungs. Help!

Don’t forget, I am looking at a very well-rendered picture in a children’s book, and I just couldn’t get it. I couldn’t see the relationship between the words and the pictures at all. I finally put the book down and felt really, really stupid for the rest of the night.

A day or two later, I picked up the book again, determined to understand. So I looked at the pictures. And I looked at the words. And then it dawned on me to draw the pictures out myself.

So I did. I drew the heart with its two chambers, and then the lungs to either side. I drew the aorta, and I labeled what it was for. I drew the superior vena cava and inferior vena cava, and I labeled what they were for. I drew veins from each lung to the heart, and arteries from the heart to each lung. Finally, I drew arrows to chart the blood flow from the body to the heart, from the heart to the lungs, from the lungs back to the heart, and from the heart to the rest of the body. I cannot draw to save my life, but at least I drew a picture that made sense to me.

Finally, and I know you will be shocked to hear this, I made a list. There is always a list somewhere, waiting to be born, and I will always find it. My list (which is now tucked safely inside the book for easy reference) looks like this:

1) Veins carry carbon dioxide from the body to the right chamber of the heart.

2) Arteries carry carbon dioxide from the right chamber of the heart to the lungs, where the blood picks up oxygen.

3) Veins carry the oxgen from the lungs to the left chamber of the heart.

4) Arteries carry the oxygen from the heart to the rest of the body.

I can understand this system as a linear sequence of events. I can conceptualize the difference between what arteries do and what veins do. But I cannot visualize it in my mind at all. I have the words, and I have the pictures in the book. The pictures help me grasp the meanings of the words. But I cannot hold the pictures in my mind.

Now, if I were in an operating room with a surgeon who was doing open heart surgery, and he or she explained all the different parts while showing me each one, and I could see the blood flowing and the valves of the heart opening and closing, I would hold that picture in my head for the rest of my life. I’m certain of it. I can visually remember things I see and touch. But I cannot visualize things I read, and I cannot hold a picture I see in a book in my head for very long.

So how did I get all those As in grammar school?

We had picture books to read, but tests and homework consisted solely of words. All I had to do was rote memorization, something that many Aspies are very good at. In those days, I had a nearly photographic memory. I could look at a word once and know how to spell it. All my life, I have seen spoken words and my own thoughts as word pictures in my mind. I literally see all the words spelled out across my mental screen.

So I could regurgitate information on a test without understanding it at all. I had lots of facts and lots of details, but no big picture—another Aspie trait. I could not have told you how the body parts fit together. I saw them as discrete objects. Had I gone to a school in which we were expected to synthesize information, I would have had a much more difficult time of it.

In any case, in these days of educational software with lots of blinking lights and moving images that endlessly distract and ultimately overload my senses, I’m glad to know that picture books have not gone the way of the wind. Where would I be without them?

© 2009 by Rachel Cohen-Rottenberg

Rachel’s Aspie Photo Album

Since being diagnosed, I’ve been looking at childhood photos of myself in a new light. Not only do I see a kid on sensory overload trying very hard to be normal, but I also see some interesting Aspie things I do with my eyes and with my arms. So here are some photos of me from infancy to my senior year in high school (1958 to 1976).

 
Studio portrait taken sometime between June and December, 1958
I’ve already got that focused Aspie stare and a look of alarm mixed with fascination. It’s as though I’m thinking,  “Wow, I had no idea there would be THAT many visuals. This is kind of scary and very cool at the same time.”


  

  

 
 
 
 
 

 








Outdoor photo, circa 1960
I seem to be looking off to the side in this photo, but it could just be that the sun was in my eyes.

Okay, I put it here because it’s cute. ;-)  

 
 
 
 

 
 
 
 






Fifth-grade school photo, 1969
It’s subtle, but my eyes are definitely averted in this photo. I couldn’t quite make eye contact with the photographer and his camera.

  

  

  

  

  

  








Newpaper photo, summer, 1969
My father took this photograph after I won a statewide piano contest.

Playing in recitals and contests completely overloaded my senses, and I felt very empty inside.  I recall vividly going through the motions of having the picture taken and trying to pretend that everything was fine.

 
 
 
 

  

  

  

 

 










Photo in the music room at my high school, spring, 1976
I love this photo, because it shows me concentrating at the piano. By this point, I had switched piano teachers and was freed from the trials and tribulations of recitals and contests. My new teacher was an elderly French lady who taught me proper technique and helped me break down a piece of music in order to understand all the different parts.

Recently, my oldest friend in the world sent me an email to tell me that she had had a very vivid sense memory of sitting in the sun in the music room, listening to me play the piano. Since I received her email, this photo has become especially precious to me.

  

  

  

  

  
 
 
 
 
 
 










Photo taken outside my high school, just before graduation, 1976
I remember feeling very relieved because high school would soon, mercifully, be over. It was a beautiful, breezy spring day. As I look at it now, I can see that I didn’t quite know what to do with my arms (another Aspie trait).


























My hippie-chick photo, 1976
I saved this one for last because it is one of my favorite photos of myself. I am looking directly into the camera, and on my face is the fierceness and the focus that I felt inside.

Note that I’m wearing my regulation hippie-chick attire: beaded necklace, embroidered peasant blouse, and blue jeans. I’ve also got the long hippie-chick hair, parted in the middle.

 

I love looking at old photos with new eyes.

© 2009 by Rachel Cohen-Rottenberg

Impaired Theory of Whose Mind (ToWM)?

According to most scientific literature, an impaired Theory of Mind (ToM) is a core component of autism. In his 2001 paper Theory of mind in normal development and autism, Professor Simon Baron-Cohen explains his view of ToM impairment and its implications for autistic people:

“A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993). By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds. Difficulty in understanding other minds is a core cognitive feature of autism spectrum conditions. The theory of mind difficulties seem to be universal among such individuals.” (Baron-Cohen, 3)

Every time I read this paragraph, my mind boggles at the dissonance between a) Professor Baron-Cohen’s view of autistic people and b) the profound diversity of experience of people on the spectrum. Let’s parse it one step at a time:

1. Having a normal ToM means the ability to reflect upon another person’s beliefs, desires, intentions, imagination, emotions, and other mental states.

I don’t remember a time when I didn’t reflect upon the mental states of other people. I have close friendships of many years duration with neuro-typical men and women. I have a wonderful marriage to a neuro-typical man, and I’m raising a well-adjusted neuro-typical daughter. I am fully aware that other people think differently than I do, sometimes painfully so. Therefore, I must have a “normal” ToM.

But I also have an AS diagnosis. Interesting.

2. Autistic people seem to have a universal difficulty with ToM abilities.

Uh oh. I must be really odd. I’m able to reflect upon the minds of others. Apparently, no other autistic person can match this feat. Just call me a lone ranger on the neurological spectrum.

3. Having a normal ToM is one of the core components of being a human being.

Oh, my. If you prick us, do we not bleed? Apparently not.

Now, I will readily admit that I cannot infer a person’s mental state by reading nonverbal cues. And while I can reflect endlessly upon the mental processes of neuro-typical people, I find certain of their characteristics unfathomable. Why do people enjoy socializing? What do they get out of it? Why are most people put off by discussion about serious matters? I haven’t a clue.

But let’s turn the tables for a moment. Let’s look at how unfathomable autistic people seem to the vast majority of neuro-typical folk. For many decades, scientists had no ToM regarding the mental processes of an autistic person. Guess how they found out? An autistic person wrote about it. She put it into words. She had to, because your average human being could not infer the mental state of an autistic person by translating his or her nonverbal cues. As Oliver Sacks wrote:

“In 1986, a quite extraordinary, unprecedented and, in a way, unthinkable book was published, Temple Grandin’s Emergence: Labeled Autistic. Unprecedented because there had never before been an ‘inside narrative’ of autism; unthinkable because it had been medical dogma for forty years or more that there was no ‘inside,’ no inner life, in the autistic. . .extraordinary because of its extreme (and strange) directness and clarity. Temple Grandin’s voice came from a place which had never had a voice. . .and she spoke not only for herself, but for thousands of others…” (quoted on www.templegrandin.com)

Wow. Temple Grandin wrote a book and the scientific community had a collective epiphany: “Eureka! We used to think autistic children were just empty shells! What a revelation!”

Who had the imperfect ToM for all those years? Who needed the nonverbal cues to be verbalized and explained? Who was mind-blind? It wasn’t just us.

So why do we on the autism side of the neurological spectrum get stuck with the label of having an impaired ToM?

And why are people on the neuro-typical side of the spectrum considered to have an unimpaired ToM, despite the fact that, prior to 1986, most folks had no idea that autistic people have an interior life?

The problem, of course, is that the scientific community has dubbed its own (neuro-typical) way of thinking “normal” and the autistic way of thinking “abnormal.” Thus, scientists have insisted upon interpreting an autistic person’s behavior the way they would interpret their own behavior.

For example, most doctors would consider an autistic person who does not speak in words to be “low functioning.” But what if the person were having a conversation without words? What if the person were using his or her sense of smell, taste, touch, sound, and sight to have a two-way interaction with his or her environment, an interaction that signals a vivid awareness of the richness and diversity of the sensory world? What if the person speaks through drawings, or paintings, or music? If an outside observer fails to properly read and interpret the signals that an autistic person provides, who has the impairment—the neuro-typical person or the autistic person?

My answer would be, “Neither.” One can only use the word “impairment” if one accepts the categories of “normal” and “abnormal.”

My hope is that the conversation will evolve past these notions and toward an appreciation of neurodiversity in all its forms.

© 2009 by Rachel Cohen-Rottenberg

Picture Books, Anyone?

When my daughter was young and we were homeschooling, I bought lots and lots of children’s books. I especially enjoyed buying used picture books. As my daughter got older and left the era of picture books behind her, I couldn’t bring myself to part with them. I loved having them, but I kept wondering why. Was it nostalgia? Was I unable to let go of my daughter’s childhood? I wasn’t sure.

In the past few months, I’ve found myself buying children’s books from the thrift store where I volunteer. In the beginning, I chose books that we had owned and given away. When I brought them home, I put my daughter’s name in each of them, even though she had no interest in them at all.

Then I started reading Women From Another Planet? edited by Jean Kearns Miller. In it, there is an interesting discussion of the difference between Aspie and NT developmental trajectories. The book suggests that for some Aspies, the developmental sequence does not go from babyhood to childhood to adolescence to adulthood, as it does for most NTs. Rather, some of us Aspies maintain certain aspects of our childlike minds even as we develop more mature mental abilities:

“It seems that as an NT grows up, something called brain cell pruning take place—some areas of the brain atrophy in order to produce the normal NT adult. I don’t think that’s happened with me, which is why some people think of me as childish because I still have pleasure in many of the things I had as a child. Perhaps people sometimes mistakenly think that because the childlike parts of my mind have not atrophied, that the adult parts of my mind have not developed, which is incorrect.” (Kearns, 22)

Reading this section broke open my love for children’s books. I thought, “Hey, wait a minute! I love those books. I’m putting MY name in them.” And I have. I’ve even been reading one or two of these books every day. And whenever I see a beautiful children’s picture book, whether it’s about a Jewish holiday or the weather or a folk tale from Africa, I pick it up.

In the process, I’ve also rediscovered my love of reading biographies. When I was a child, I read nearly every biography on the shelves of our grammar school library. Recently, I found an autobiography by Willie O’Ree, the first black player in the National Hockey League. It’s directed at middle-schoolers, and I loved it, especially because he mentions hockey players that I admired when I was a child. I hadn’t thought about those names in many years. The book brought back a host of very good memories.

As I think back, I find I have few memories of reading picture books as a child. I was a self-taught reader by the time I started school, and by the sixth grade I was reading Of Human Bondage and The Grapes of Wrath. So perhaps my developmental trajectory was to start with the serious works of literature, earn two English degrees, and end up with the children’s books. I rarely indulge my Aspie penchant for collecting things (I hate clutter) but with the children’s books, I’ll gladly make an exception.

© 2009 by Rachel Cohen-Rottenberg

Feeling Sadness About Having AS

I’ve noticed in the past week that I don’t have a lot of energy for relating to people outside my family. It may simply be that it’s January in New England and my energy is low, but this lassitude seems related to having Asperger’s Syndrome, so I thought I’d share my feelings.

Now that I have a diagnosis, I am hyper-aware of what an effort it takes for me to enter into an exchange with another person. I feel myself pulling energy up from deep inside. I’ve been working hard at communication all my life, but now I notice how much it takes out of me. A part of me is saying, “Don’t bother trying to connect. Just settle in, hibernate, and keep conversation to a minimum.” This feeling is in very sharp contrast to how I usually feel about going to my volunteer work and running errands. I usually look forward to being around people. I have a lot of good energy to give and I generally enjoy sharing it.

So why do I feel this way right now?

For one thing, I’m conscious of the cost. I know that when I get home, my mind and body will be very tired.

For another, I’m conscious of my blindness to nonverbal communication, and this blindness saddens me. The people I work with at the store are wonderful. They’re interesting, funny, kind, non-conformist, and welcoming. I can see those qualities quite clearly, but I’m aware of how much I can’t see. I’m aware of how much is being communicated by body language and facial expression that I’m missing. I wish I could connect in the same way.

But instead, I have only words. I have plenty of them, and I used to think that was enough. It doesn’t feel that way right now. Right now, I feel very limited.

Last week, I said to my husband that I’m enjoying people much more these days because I don’t expect them to be my friends. I know it sounds cynical, but I don’t feel cynical about it. In fact, I feel a kind of detachment and acceptance that I’ve been searching for all my life. I have my close friends, and as I look back, these friends weren’t people I sought out. I just happened upon them, and we clicked. So if I happen upon another friend, all well and good, but it’s easier on everyone if I don’t expect it. That way, people don’t disappoint me, and I don’t resent them. It’s good to be moving on from that paradigm.

So, when I’m feeling good, I’m very happy letting people be themselves and enjoying them for who they are. When I’m feeling low, I feel very insufficient. At the moment, I wish I had a blind man’s cane when I enter the social world so that people would know that I can’t see what’s right in front of me. The fact that this disability is invisible is very difficult.

But being a practical person, I must have a plan. So tonight, I sent an email to an AS-literate therapist, asking whether she knows any therapists in my area who could provide emotional support. I’ve learned that my last therapist, who does not know very much about AS, would not be helpful about the issues I’m facing. I miss having someone to go to for support and guidance, so it’s time to set out and find a good counselor.

I’m also going to contact an occupational therapist about an hour from my home. I need to get a sensory assessment and begin some sensory integration work. Because of the winter storms, I’ve been putting it off, but I need to make the appointment and hope for decent weather.

And I must remember: we are in the dead of winter here in New England. I will feel much better when I can see the earth under my feet.

© 2009 by Rachel Cohen-Rottenberg

Creating a Sensory-Friendly Living Space

As I mentioned in my last post, ordering the things of space helps me to manage and reduce sensory disorientation and overload. Recently, I’ve found my love of organizing especially useful in creating a calm living environment.

In November, my family and I moved into our new house. Built in 1870, the house is actually somewhat old (by American standards), but we feel as though we’ve moved into a home built just for us. Our furniture fits perfectly into the available space. Nearly every room in the house gets plenty of good light, and each person in the family has a place to go when he or she needs time alone. It’s a wonderful, rambling house with hardwood floors and tin ceilings. Just right for us.

Fortunately, the house was completely empty when we moved in, so I haven’t needed to do a lot of heavy lifting to make the space work. Plus, our town has four second-hand stores—and I work at one of them—so I’ve been able to find a variety of things at very low prices.

In consultation with my husband, here’s what I’ve done to make the house a sensory-friendly place:

Color. I love bright, deep color, so one of the first things I did was to put up curtains in various colors: beige, red, blue, teal, and purple. For the kitchen windows, I simply used tension rods and hung up some of the colorful shawls I’d bought this past summer. I always buy second-hand rayon sarongs whenever I can find them. At different times in my life, they have served as wall hangings, tablecloths, curtains, and prayer shawls.

Patterns. I love to look at mandalas and find them very calming. I managed to find some curtains with mandala patterns and deep, rich, blue and teal backgrounds. My eyes are always following visuals, and it’s lovely to have something so bright and so calming at the same time.

Photographs. What to do with photographs? I have a huge number of pictures of my daughter at every stage of her life and a plethora of ancestor photos. My husband also has an abundance of photographs of his extended family.

For the most part, the pictures of our children are on the mantle in the living room and on the wall leading upstairs. It’s fun to walk up the stairs and to see the kids at different ages. It’s a bit like time traveling.

As for the ancestor photos, I could spend much of my day simply gazing blissfully at them (and then returning them to their box), but the question of how many to actually put on the walls is one I’m wrestling with.

In our last house, I had a whole wall of ancestor photos, and I loved it. It made me feel part of something larger than myself, and it eased a great deal of my Aspie loneliness. But, after awhile, the ancestors started overwhelming me with their presence. It felt too much like having a crowd of people in the living room. I ultimately (and mournfully) took down a large number of the photos.

Now, many of the ancestor photographs are sitting on the floor of my loft, ready to go on a wall or rest easily in the (very clearly labelled) box from which they came. My solution, at this point, is to scatter the ancestor photographs in different rooms in the house. So far, there are a few photos in the kitchen, which is a great place for them. My focus in the kitchen is on food, or on the colorful placemats on the table, or on the dishes that need to be done, so I can give the ancestors a passing glance without being drawn into their world. And when I need company, they are there.

Empty space. What beautiful words! I love empty space. I love being able to walk into a room and see most of the floor and wall space. I very much need a clear visual field. While living with a family doesn’t always make empty space possible, I’ve created as much space as I can in each room without driving my family nuts.

Symmetry. Another beautiful word! I try to make sure there is symmetry wherever I look. The photos need to be lined up properly. The furniture in each room needs to be in balance. Candle holders and pottery need to be arranged in easily recognizable patterns.

A room of my own. My loft is my personal, restorative space, and I’ve been able to create it with the right combination of empty space and beautiful objects to look at.

There is only one photograph in my loft, a photograph of my great-great-grandmother Rivka Mogulefsky Levine. I have a bond with this woman that I cannot explain. She died many years before I was born, and I recall no one telling a single story about her when I was a child. But when I first saw her picture, I fell in love with her. I find her presence very calming.

I also have a number of cool things hanging in my window: a string of multicolored cloth chickens with a bell at the end, wind chimes from Cape Cod, a sun catcher with dried flowers in it, an old beaded necklace, and a clay mask my daughter made some years ago at summer art camp. I have also set out some small pieces of pottery, along with my Djembe, and a vintage footstool and lamp. And then there is a futon, presently covered with one of my quilts and lots of comfortable pillows.

I love the saying, “If you’ve met one Aspie…You’ve met one Aspie.” The way I set up my living space may not work for everyone, but hopefully, I’ve passed on some useful ideas for creating a space that is also a sensory sanctuary.

© 2009 by Rachel Cohen-Rottenberg

Managing Sensory Overload: My Perfect Aspie Volunteer Job

This past March, my family and I moved from our 22-acre farm in western Massachusetts to the center of a small, friendly Vermont town. Once we got settled in, I looked for ways to meet people in the community and decided to do some volunteer work. Months before I ever considered the possibility of having Asperger’s Syndrome, I managed to find the perfect volunteer job for my Aspie strengths and sensitivities.

I began working at a local thrift store. All purchases from the store benefit the local area hospice. People in the community donate to the store an enormous amount of everything you can possibly imagine. The atmosphere is wonderful. Perhaps it’s because the store supports hospice, or because the staff is so friendly, or because the volunteers enjoy themselves so much, but I’ve never been in a store that feels so welcoming and so easy for me to navigate.

When I first began volunteering, one of the staff members asked me to straighten up the children’s area. I soon found out that the children’s area is one of the more challenging places to straighten. Kids being kids, things get left all over the place on a regular basis.

But being a mom, I’d brought order out of chaos before. So, I scoped out the situation and set to work. On certain shelves, I put learning games. On other shelves, I put puzzles and board games. Art supplies went on another shelf, and the stuffed animals got several of their own cubicles, with the top shelf reserved for the dozens of teddy bears that had somehow found their way into the store. There were bed linens and baby blankets, toy trains and dump trucks, rattles, action figures, lunchboxes, and tea sets. After two hours, everything had magically found its place, and all was right with the world.

And that was just one day.

The next day, I organized some of the housewares—plates, cups, glasses, blenders, coffee makers, casserole dishes, pots, pans, and the occasional vintage percolator.

The day after that, I organized the linens—tablecloths, napkins, placemats, sheets, pillowcases, and curtains.

When I came in the following week, the volunteer coordinator said that people on the staff were just amazed at how intensely I could focus and how well I could organize things.

It was music to my ears. I love organizing my loft space. I love organizing our family mementos in boxes in the attic. I love organizing photographs on the walls of our house. Since my diagnosis, I count “organizing the things of space” as one of my most enduring Aspie special interests.

But it had never before occurred to me that being able to focus intensely on objects and organize them were actual skills that people outside my house might find valuable. And yet, they do, every day. In general, when I come to work, one of the managers just gives me a box of donated goods, points me to a particular department, and says, “Work your magic.” My favorite days are the ones I spend sifting through a small box full of necklaces, bracelets, and other assorted treasures, untangling one from another, matching up the stray earrings with their mates, and creating symmetry that will last for, at most, an hour.

Sometimes, I’m so immersed in the process that I lose track of time completely.

Through this work, I have found that I love objects. This realization was a little troubling at first, because it’s always been the bedrock of my ethical system that people are more important than objects. But when I began to explore the possibility that I might have Asperger’s Syndrome, I had to take a good long look at my relationship to the visual world. Working in the store helped bring this issue to the fore.

So, I posed the following question to myself: “Do I think that objects are more important than people?” And the answer was an immediate, “No.” I care about people. I’m a wife, mom, and friend. I’ve worked in hospice, battered women’s shelters, schools, and daycare centers. The problem is not people. The problem is that my senses can get overloaded by people.

So then I posed another question: “Do I feel more comfortable with objects than with people?” And the answer was a resounding “Yes.”

I am very soothed by the aesthetics of objects—how they look, how they feel, and in the case of children’s toys, how they sound. Just holding objects in my hands and deciding where to put them is very grounding. And the thrift store offers such great variety. I see things that have come from people’s homes, things that they have had for years, and sometimes generations. My senses of sight and touch enjoy the ever-changing array of objects. I feel calmed and reassured by working with them.

And, needless to say, I love organizing things because it allows me to create order in a world that can very easily overload my senses.

But the work entails more than working with objects. I also help the customers, and I find that I enjoy it immensely. People need to know where to find a particular item, or where the bathroom is, or whether they can use one of the dressing rooms. Once, when I was working on organizing the jewelry, a customer came over and began helping me. We had a very nice chat.

If I had to help customers without the benefit of objects as a kind of “meeting place,” I would become very overloaded. I could not work on the telephone as a customer service person or in an office as a counselor with a full caseload. I need the anchoring in the tactile world. Focusing on work that soothes me, I can thoroughly enjoy the time spent helping and talking with other people.

I still have to be very careful that I don’t go into sensory overload. Ordinarily, I don’t have a big problem with hypersensitivity to touch, but if there are too many people sharing one of the smaller aisles in the store, I can feel my overload meter start to climb. At those moments, I excuse myself and go to the break room, where I can unwind, breathe, and get a drink of water.

I also take care to limit my time on the floor. After two or three hours, I have to go home. Even on the best day, I’m so sensitive to the energy of other people that if I spend too much time there, I can find myself moving toward overload. First, I start to feel flushed and anxious. Then, the mental and physical exertion of parsing conversations and filtering out stimuli begins to feel tiring. Those are my warning signs that I need to leave for the day.

I used to push myself through these kinds of experiences. I wanted so much to be around people, and I rebelled against cutting my time short. But there is only so much my neurological system will allow me to do before I need to rest.

I try to respect that now.

© 2009 by Rachel Cohen-Rottenberg