In the process of reflecting on all of your responses, I’ve come upon a new realization. If I feel at home with myself and accept myself as I am, then I can continue to feel at home with other people who experience the world as I do. The key to developing a new sense of belonging is to cultivate a new sense of self-acceptance. As LizzieK8 pointed out so succinctly, “Accepting who you are is really the next step.”

For most of my life, the road to self-acceptance has been part of my spiritual path. I’ve done some good, useful work on this path, but I’ve never felt sufficiently grounded. In these past few days, however, my spiritual path has come down to earth and into my body. Walking that path means paying attention to the minute particulars of what I can do from day to day, understanding the work that I can’t live without, and getting a clearer sense of the kind of help and support I need.

The hardest obstacles on the path are all the negative connotations of the word autism. Like most people growing up in the larger culture, I was told long ago that autism is a scary word. The word suggests so many things that I now know to be false: that I don’t have feelings, that I’m not quite whole, that I’m “less than” everyone else, and that my family is to be admired (and pitied) for putting up with me. I know that this nonsense is all untrue, but undoing it is very hard work. Once a lie comes in and sets up house, it takes a lot of doing to root it out.

So, I’ve been looking at the internalized negative messages about my autistic traits, and I’ve started rewriting those messages. My goal is to empty them of their power to grind me down. Here are a few examples of the challenges that I’ve struggled with over the past few days, and the steps I’ve taken toward accepting who I am:

1. I cannot think clearly when other people are around, especially if I think that people are going to interrupt me.

It’s not just that I need time alone to write my blog posts. It’s that I need time alone to write a grocery list. I have a poor working memory and difficulty sequencing tasks. Both challenges are common and significant aspects of AS. 

Regarding grocery lists, I have a strategy for making sure that each member of my family gets what he or she needs. I’ve made two very complete lists of all of our staples. One list is for my daughter’s food preferences, and the other list includes the edibles that my husband and I like to have around. I take the lists, look around the kitchen, see what we need, and write it down. Even by myself, it’s difficult not to get distracted by a hundred other things, but if someone else is in the room, it’s like running a sensory obstacle course. As Saja put it, “It’s like my head is filled with sand or buzzing flies or something, until I’m all alone, and then my thoughts can flow.”

In the past, I’ve figured that I was just plain stupid, hopelessly broken, extremely lazy, or not working hard enough on my therapy. Now, I realize that I have a Pervasive Developmental Disorder, otherwise known as a high-functioning form of autism called Asperger’s Syndrome. Doesn’t that sound ever so much better?! Don’t I feel just wonderful now?! The negative connotations of all these words send up some very uplifting and useful thoughts: Not me. I’m smart. I’m not one of those people.

Well, I reply, I am smart, and those people are my people, thank you very much. My people show care and concern when one of us feels like she’s sinking. My people use their minds to try and figure out solutions to the problems we share. My people say things so straightforwardly that it shocks the less autistically wired. My people are not broken, not crazy, not heartless, and not stupid. My people are…just like me.

So…where was I? Oh, right, the grocery list. When I was writing down the grocery list this Friday, my husband started to ask me about something. I was tempted to try and think about two things at once, because, after all, I’m smart. But I didn’t. Instead, I had the presence of mind to say, in a very straightforward and friendly voice, “I can’t answer a question and do the food list at the same time.”

Simple. No judgment. Just a statement about what’s true. And my husband’s response was, “Oh, right, I forgot.”

What a relief. The more I can articulate what’s going on in a neutral way, the better I do at accepting it as a part of me.

2. I have developed a complete aversion to sweeping the floors and cleaning the bathrooms.

I’ve been doing these tasks all my adult life, and it’s been making me progressively more irritable, grouchy, and generally unpleasant. I thought I was just lazy and immature.

I’m not. Having an AS and an SPD diagnosis, I finally understand the core of the problem. It’s called severe gravitational insecurity. That’s what my OT calls it, and she has a license and everything. The problem is that when I start to move my head through space, I can’t tell where the ground is, so I don’t have a feeling of stability. Moving my head anywhere except in a line with the rest of my body is extremely disorienting.

Sweeping means that I have to bend down to look under the bed. It entails moving furniture and bending over to see what’s behind it. Cleaning the bathroom means bending down into the tub. No wonder I get grouchy and irritable. It’s my nervous system’s way of defending itself. It’s as though my nervous system is saying, ”Um, whoa, excuse me, please don’t do that thing you do with your head in mid-air and a sponge in your hand.”

So, given that my nervous system and I are trying to be friends, I’m about to do something I said I would never do: I am going to find someone to clean my house.

Trust me, this is big. I grew up in a neighborhood in which many people hired housekeepers, and my mother was very proud of the fact that she cleaned her own house. I’ve inherited that pride, and I’ve become a reverse snob about it. But I really have to let go on this one. My husband did the cleaning on Friday, but that just can’t go on indefinitely. He’s 64 and perfectly healthy, but he’s not getting any younger, and I don’t want him shouldering all these responsibilities. Since I’m dealing with an actual, real-life disability, we need to start getting used to the idea that we need assistance. We need to start calling in support now.

3. I’m about at my wit’s end with auditory overload.

I feel so crowded and so overstimulated by sound that my nervous system is regularly going haywire. It happens everywhere outside my house, especially now that people are spending more time outdoors. And at the store, there is a music speaker directly above the jewelry case where I work. At first, I’m rockin’ to the music, but pretty soon, it’s enough to make me weep.

So, given my acceptance of the fact is that I’m autistic and that sound is really hard for me, I’m considering wearing earplugs when I’m out in the world. Yes, earplugs. This weird sister just got a little weirder. I’ll still be able to hear enough to know whether someone wants to speak to me, and if they do, I’ll take out one of the earplugs and listen. I mean, what’s worse—someone thinking I’m odd, or my head feeling like it’s going to explode? Gee, let me see…

I’ll let you know how it goes.

4. I feel really awful and very insufficient when my husband picks up the slack for me.

Luckily, I’m beginning to realize why. Read carefully, because it’s weird: I actually think, and I am not lying, that basic tasks are as difficult for him as they are for me.

Of course, they aren’t. He has his limits, but going to the grocery store and chatting it up with people is fun for him. And he likes cooking, too.

So why do I share Saja’s experience of having such a loving, sensitive, supportive husband that it makes me want to weep? It’s because I’m used to driving myself relentlessly in my quest to be “normal,” all the while denying how much work it takes to navigate through the sensory world. Over the course of my life, I haven’t been as loving, or as sensitive, or as supportive toward myself as I’d like to think.

And then, one day, out of the clear blue sky, my husband comes along and says, “I love you just as you are, and I can help you take care of things,” and it just doesn’t compute. At all. Fortunately, I’m learning that it doesn’t have to compute. I just have to stand there and accept that my husband is actually speaking the truth.

After all, as one reader said to me, neuro-typical people who love, respect, and support their Aspie spouses and children have the same difficulties with belonging as we do. Because families with autistic people are so different from what most people consider normative, our neuro-typical loved ones are left standing apart in the larger world. They support us in ways that ordinary people can’t fathom. They have patience about things that other people consider impossible—like having a spouse or a child who has meltdowns. They try to understand our challenges, they know how hard we work every day, and in the best of times, they don’t expect us to be “normal.” Lots of them don’t even think that something called “normal” exists. And so, they don’t fit squarely in the NT camp, and they don’t fit squarely in the AS camp, either.

But I always feel that they are an integral part of who we are. They’ve freely consented to come with us on this journey. They’ve thrown in their lot with us. They belong here, too.

© 2009 by Rachel Cohen-Rottenberg

In my ongoing quest for belonging, here are the top five mistakes I would like to avoid:

1. Confusing competence with intelligence, and intelligence with my worth as a human being.

Untangling my self-worth from my intelligence is my greatest struggle. Whenever I find myself unable to do something, especially something that I consider simple, I think I’m being stupid, and then I watch my self-worth start to decline. This pattern has become especially clear since the Asperger’s diagnosis, as I’ve become aware of basic things I cannot do very easily.

Example: A couple of weeks ago, I went to the grocery store to get some food that my daughter had requested. On my list were some yogurt smoothie drinks that she really likes. So, I went around the store, putting things in my basket, until I got to the yogurt smoothies. There were five kinds, and I chose one of each. Easy, right?

But then, I realized that I ought to look at the pull dates, to make sure that the smoothies would still be good when she got back from her dad’s house. Each flavor had a different pull date, so I decided to replace the bottles with earlier pull dates with bottles with later ones. I’d take one flavor from my basket and put it up on the shelf, but then I wouldn’t remember which flavor to take from the shelf and put in my basket. I’d look back down in my basket to see what I already had, but by the time I looked back up at the shelf, I’d have forgotten. I had to go through this routine about half a dozen times before I got it all figured out, and I felt like I was in slow, disoriented motion the whole time.

Now, I know that what happened has nothing to do with intelligence at all. Nothing. It was a combination of gravitational insecurity, sensory overload, and a poor working memory.

I know about all of these challenges, and that they are physical. I also know that I’m not making them up or exaggerating them, because my OT actually wrote about them in her sensory assessment report. So I have a witness. A knowledgeable and objective witness, no less.

But it all makes me feel very stupid, nonetheless. I suppose I’m just feeling humbled, but somehow, feeling stupid is easier.

I’ve got to get over this one. Soon.

2. Playing competitive intellectual games in order to prove my intelligence.

Example: 3 ½ years “succeeding” in a very competitive Ph.D. program. 

The good news is that I’m too old to put myself through it anymore. When my husband and I went to a weekend conference at Hebrew College a few years ago, I couldn’t even begin to keep up with the intellectual competition. I tried, reached nothing like the majestic heights of yesteryear, and had a migraine nearly the whole time. It was so miserable that I decided to never, ever, do anything like that again.

3. Ignoring my instincts and past experience when they indicate that a group is not going to work for me.

I may have very poor social intuition, but my basic instincts are excellent. I know when a situation is not going to work, and I ignore my instincts at my peril.

Example: I should have known that my first synagogue membership would not last long when I came into the gathering in the social hall after services, and it looked like a cocktail party. I wondered why in G-d’s name I was hanging out with people who looked like my mother’s friends. The fact that the question did not drive me from the place immediately is an indication of how desperately I wanted to be there.

4. Trying to do everything “right” so that I will be accepted.

Story of my life. Story of my entire life.

Example: The synagogue experience described in my last post. This example is only one small piece of a pattern I have perpetuated for as long as I can remember.

But I’ve finally figured out why I keep trying to get it “right,” and why it will never give me what I’m looking for. Simply put, I’ve spent my entire life trying to act like an NT—all day, every day, and in my dreams, too. That’s what I really mean by doing everything “right.” I wouldn’t have defined it that way before the Asperger’s diagnosis, but it’s very clear to me now.

There is nothing wrong with acting like an NT full-time, if you actually happen to be an NT full-time, but for this Aspie, it’s been a fruitless endeavor. It would have been all right if I had tried to act like an NT only at work, since we all have to make a living at one time or another, but I went to extremes with it. Of course, I didn’t know better, but now that I do, I really must find a new hobby.

5. Idealizing a group and jumping in with both feet, only to end up angered and burned out by the injustice that inevitably arises.

I’ve made this mistake with just about every group I’ve every joined. Ironically, I end up leaving because I see things happening that violate the very principles on which the whole group is based.

Example: My unhappy experience with a local support organization. When I joined, I thought, “Wow, what a great organization! They’ll really want me to volunteer! There’s even a place on their membership application where they ask for volunteers!”

Then, when I found myself treated poorly and my offer being ignored, I entered what some people like to call “reality.”

Last week, I went around and around in my head, trying to decide whether to email the organization about what had happened and ask for her help. I ultimately spent an hour writing a good, direct, concise email.

And then, I took a deep breath, centered myself, and deleted every word. I deleted it because I have been there before, so many times. I have sent so many letters and so many emails to so many people in so many organizations, describing so many things that were so clearly wrong. And the result has always been one of the following:

a) No response at all.

b) A “circle the wagons” response, in which the person begins with one of the following phrases:

“I’m sure she didn’t mean anything by it…“
“I’m sure you misunderstood…”
“I’m sure you’ll understand our position…”
”I’m sorry you feel that way, but…”

c) A response that seems to promise hope, but with no follow-through. This response is the worst for me, because I always start out feeling optimistic, and I always end up feeling unbelievably naive.

In every organization, there are all sorts of social, nonverbal, pecking-order assumptions about treating certain individuals with deference, about defending the organization, and about a number of other concerns that I just can’t see and don’t understand. So, a person I contact at any organization will very likely defend someone higher up, come out in defense of the organization, ignore me, or do something else that drives me nuts. It’s happened before.

Enter my Aspie brain, which says that if there’s a problem, all that matters is that it get fixed. It doesn’t matter whether the person who made the mistake has a Ph.D. after his name or struggled through high school. It doesn’t matter what organization he belongs to, what his title is, what neighborhood he came from, what his parents did (or didn’t do), or what plaques he’s got up on his wall. I do not care. I am fiercely democratic. To me, all we have to do is to sit down, hear each other out, get to the bottom of things, and creatively solve the problem.

This is my Aspieness in full bloom. This is the best of who I am. And this is my version of logic. I don’t care for math or numbers, but to me, human life is full of problems begging for solutions, and everything that gets in the way is bullshit. Unfortunately, what I consider bullshit is just basic social reality for most people. Needless to say, sooner or later, a relentless force (me) meets an immoveable object (them), and it’s not a happy experience.

So, given all the givens, if I’m going to find community, it will have to be with a) other autistic people and b) neuro-typical people who treat their autistic friends and family members with love and respect.

And, very happily, I’ve begun to create such a community around myself, simply by starting this blog. In my next post, I’ll spend some more time on this subject.

© 2009 by Rachel Cohen-Rottenberg

Last Thursday, I made a big mistake that only I could see: I tried to do two things in the outside world in a single day. And worse than that, I tried to do them consecutively.

Before I left for my volunteer job last Thursday, my husband asked whether I could stop at the co-op after work to get him some more homeopathic medicine for his cold. I told him I’d try, and I felt the way I always feel about these requests: Totally Lousy. Lousy because it’s so hard for me to go to two different places in the same day, and lousy because I wish I could just say, “Sure, honey, no problem.”

In any case, I went to work, and then I went to the co-op. Outside, there were some really nice plants, so I bought a bunch, and then I went into the store and bought some medicine for my husband. Luckily, the store was quiet, so I didn’t feel completely overwhelmed. When I came home, I was tired, but that’s pretty normal after work, so I rested. The remainder of the day went along fine, and I felt great. 

Then, Friday came, and I had my first meltdown since my diagnosis in November. To understand why, you’ll need to understand that every Friday, we get ready for Shabbos (our Sabbath), which includes the following tasks:

1. Sweeping up the house (me)
2. De-cluttering the house (me)
3. Emptying the wastebaskets and recycling (me)
4. Buying the food for dinner (my husband)
5. Cleaning the bathroom (my husband)
6. Setting the table (my husband)
7. Cooking the food (my husband)

This past Friday, though, my husband was sick, and I started worrying about having to take on some of his tasks. That was the beginning of the meltdown: the worry. I knew I couldn’t do the food shopping myself and get the house cleaned up, so I offered to go food shopping with him. I figured that it would help us both. So that was the plan.

Nice plan. Except that then I had to figure out in what order to a) clean the house, b) get a shopping list together, and c) go to the co-op. But I couldn’t even get to the point of sequencing. Each task felt absolutely monumental. Like. Turning. A. Barge.

So, I started with what was familiar. I started sweeping. And as I started sweeping, I noticed that I was becoming more and more sensitized about how hard it is. I’m fine with taking the broom and moving it back and forth on the floor. But then, there’s having to pick it up and pull the dust bunnies out of it; somehow, having the broom upside down makes me dizzy. And then, of course, there’s having to bend down with the dustpan and sweep the dust bunnies into it. Serious gravitational insecurity moment. Just thinking about it makes me anxious. And then, the worst part is sweeping under the bed. Arghh. I have to get down on the floor on my stomach and kind of shove the broom here and there till I get all the dust balls. When I’m all done, I am one dizzy, disoriented human being.

When I realized how hard all this was going to be, I started to get really agitated. And when I get agitated, I start thinking really helpful thoughts, like, “Hey, Rachel, if you’re so smart, how come sweeping the floors is so hard, huh? Huh? HUH?” As my self-esteem started going down, my irritability started going up, until I was stomping around and angry at everything. When my husband committed the unforgiveable sin of moving the recyclables to the garage, the recyclables that I had planned to move myself, thank you very much, I just about had a cow. Fortunately, I was able to recover some sense of time and space, and say, “It’s not you I’m angry at. It’s me. It’s me. It’s me.”

Ultimately, I just broke down into inconsolable sobbing. The more I thought about how hard it was to sweep the floor, the more I thought that writing up a shopping list was beyond my skills as a human being. How could I possibly transition from one task to another in the state I was in? Especially when writing a shopping list required time and concentration that seemed impossible to locate at that moment. On a good day, each task feels like a big challenge. On the day following one in which I had pushed my limits, each task seemed beyond my reach.

Hubby tried to give me some comfort, but I just kept saying, “Everything feels so incredibly hard. Why does it feel that way? Why can’t I just sweep the room without getting dizzy? Why can’t I just make a food list and be done with it? I can’t stand it.”

And then he said the words that I’ve been waiting to hear all my life:

“It’s not your fault.”

I melted. What an incredible relief. It’s not my fault. I’m doing the best I can, and then some. I have to accept myself as I am. I need to stop apologizing for what I can’t do. It’s not my fault.

Wow.

Okay, hubby loves me as I am. He sees me clearly, and he loves me as I am. That’s very good. Cross that worry off my list. Done. I got it together to make the food list and go shopping. My husband even swept under the bed and swept up everything into the dustpan. We were both tired out, but we were in it together, and that put me in a much better frame of mind.

But then, on the heels of this major piece of wonderfulness, came the second worry: I don’t do enough for my daughter. I can’t cook more than a one-course meal because the sequencing is too hard. I can’t go to her concerts at school because the sensory overload is immediate. I didn’t go to the paintball place for her 8th birthday. And on and on like that.

I was right back in the soup. I felt like writing her a letter, apologizing for all the things I haven’t been able to do over the course of 16 years. I know, it’s a little much, but that’s how I was feeling. I decided that when she came back from her class trip, I’d talk with her about it. I’d try to explain why I am the way I am. She knows about the AS and SPD, but we haven’t talked about its impact a lot lately.

So, I was getting ready for this conversation when Mother’s Day came, and I thought, great, we’ll have our talk today, when everyone is in a good mood. And then, before I got the chance to initiate even the merest hint of a beginning of a conversation, my wonderful, loving, utterly fantastic daughter gave me a Mother’s Day card she had made.

And the card said, “Thank you for being such an awesome mom. Thank you for everything you’ve done for me. I love you so much.”

I couldn’t believe it. It was perfect. I said, “That’s so beautiful, Ash, and so much what I needed to hear.” And then my big strong teenager gave her little Jewish mom a great big hug.

I melted. Again.

So, in the course of 72 hours, I got to hear the words I most needed to hear:

My challenges and disabilities are not my fault.

I am an awesome mom.

It’s no coincidence that today, I’ve finally got this cold that’s been coming on and going away for months now, over and over. Until today, I’d start to feel sick, and then a few days later, it would turn into nothing. This would happen in two-week intervals, over and over and over.

Now that I’ve had these two weighty pieces of worry taken off my body and soul, I can get sick like a regular person, get over it, and go on with my life. That sounds pretty good, don’t you think?

© 2009 by Rachel Cohen-Rottenberg

1. In her response to my Like a Deer Caught in the Headlights post, Soph wrote about the experience of being talked at and overwhelmed:

“On one recent occasion I literally did feel as if my brains had been scooped out and this person’s thoughts were all I had in my head. It actually was like brainwashing.”

I couldn’t believe it. She had described exactly how I felt every time I talked to my mother. My mother was quite a relentless talker, and she would talk over, under, around, and through me. It left me feeling like an empty shell holding only her thoughts and feelings. It took many years of recovery and empowerment work to be able to hear my own inner voice.

Even now, I find that when I’m around people who are relentless talkers, who won’t let me get a word in edgewise, or who won’t respond directly to anything I’ve said, I feel just plain lost. It’s like I just go away. Even though I may seem like I’m doing okay, my brain and all my senses are on total and complete overload.

Last week, I had another experience with someone talking at me. I am happy to report that this time, I just got up and walked away. Just like that! I finally realized that I had a very simple choice: I could protect the other person’s feelings, or I could protect my own very sensitive neurological system. I chose wisely.

2. In her response to my post about my second OT visit, Linda wrote about having a sensation of falling when going to sleep at night:

“I sucked two fingers at night until I was fourteen because the stimulation helped balance my system so that I didn’t have strange floating, falling and tipping sensations.”

This comment really knocked me out. As an adult, I have sometimes had the sensation of falling down when I’m falling asleep. I’ll be drifting off to sleep, and then I feel as though I’ve slipped backwards going down a stair or walking off a curb. It feels as though my legs have gone out from under me. I feel weightless, and then, I feel like I’ve hit the ground. I always wake up very startled by this sensation, and I nearly always let out a shout.

I’ve always wondered what this experience is about. I emailed my OT about it, and she said that she had heard similar stories. She didn’t have an immediate answer as to why I would have this experience, but she said she’d ponder some possible explanations. I’m wondering whether it has something to do with my gravitational insecurity. I have an appointment this week, and I’m looking forward to hearing what she has to say.

If you feel so inclined, let me know whether you’ve had experiences similar to the ones I’ve described. It’s been a very great relief to me to know that I’m not the only one.

© 2009 by Rachel Cohen-Rottenberg

For my third visit, I arrived in slightly better repair than I had for the previous ones. I was coming down with a cold, but I felt pretty grounded, and I’d actually enjoyed the drive. The OT spent a little while catching up on how I’d been doing, which didn’t take long, since she reads my blog! We decided that I should abandon the whole Therapressure brushing/bean bag/soft fabric therapy. She usually begins with the Therapressure protocol because, in kids, tactile defensiveness can be a big obstacle. For me, though, it’s not such a big problem, and it wasn’t worth the resistance it was triggering.

That issue being decided, we went into the gym. Yay!

First things first, of course. She ran the Thumper on my back for a few minutes. Pure heaven. If she’d run it for the whole hour, it would have been worth the drive. Then, she had me stand and watch a big red ball swing back and forth. I could track it with my eyes and was even allowed to move my head this time. Easy enough.

Next, on a big ceiling-to-floor whiteboard, she drew a picture of a sun over a house. She had me stand 10 feet away and then walk forward and backward while looking at the picture of the house. I walked forward just fine, but I got a little disoriented walking backward. I was afraid I was going to walk back too far and bump into something. She suggested I just count my steps going forward so that I wouldn’t worry. That solution worked fine.

Then, she asked me to walk forward looking at the picture of the house, and backward looking at the picture of the sun, moving my head up or down as needed. I did this exercise several times. It seemed okay, except that I started to notice that I was getting overloaded. At this point, we stopped and did a couple of grounding exercises. I did a hand press by pushing my palms against each other with my arms akimbo, and held the position for several seconds. Then, I did a hand pull by clasping the fingers of one hand with the fingers of the other hand, palms together, and pulling. Those two exercises helped. A lot.

The next exercise was great fun. I sat on a big peanut-shaped physioball and rocked from side to side. During this time, the OT drew a picture of waves under the picture of the house. Then, she put on some great Native American drum music. She asked me to focus on the picture of the sun for a few moments, then on the picture of the house, and then on the picture of the waves, all the while rocking laterally to the drum music. I love, love, LOVE rocking laterally, I love, love, LOVE hearing drum music, and I can hyper-focus on a visual like I’ve been doing it all my life (which, actually, I have been doing all my life), so this exercise was well within my comfort zone.

So there I was, rocking to drum music and focusing on visuals, and having a great time until the session was nearly over. Of course, I had to get grounded with the Thumper treatment again. How else was I to get in my car? I was so relaxed by the time it was done that I had trouble imagining how I was going to get up off the mat–especially because my head was on an insanely soft piece of fabric.

The point of all these exercises, as I understand it, is to help me a) expand my sense of space by moving in different directions, and b) overcome some of my gravitational insecurity by moving my eyes in a different direction than the rest of my body.

Since my OT reads this blog, she saw that I’ve been wanting to relearn Torah cantillation. So, for homework, she suggested that I put a big paragraph of Hebrew text on the wall, and then:

1. Walk forward and backward as I sing the words from right to left, going from top to bottom. I’m a little dizzy just thinking about it, but I’ll give it a try.

2. Sit and rock laterally as I sing the Hebrew text from right to left, going from top to bottom. This exercise sounds more inviting.

She also suggested that I drum and rock from side to side, so I’m getting my djembe out of the corner and doing some music with it. Between the singing and the drumming, I’ll get lots of vibrations going in my body, which will be soothing to my vestibular system, especially when I rock laterally.

I’m looking forward to seeing what happens.

© 2009 by Rachel Cohen-Rottenberg

For my first appointment, I ended up on her doorstep feeling really crummy. I was having a flare-up of a very painful condition that no one has been able to explain. Perhaps once or twice a year, I get a terrible pain in my bladder, like I have a urinary tract infection, except that when I use the bathroom, the pain radiates from my bladder, right up through the center of my body, down my arms, all the way to my hands and the tips of my fingers. I yell and cry until it passes. I’ve been checked many times for UTIs, and it’s not a UTI. No one seems to know what it is. (If anyone reading this knows what it is, please tell me!)

I told my OT what was happening, and she said, “What would you like to try? The big heavy blanket? The Thumper?” I went for the big heavy blanket and immediately felt comforted. As I was lying on the floor, enjoying my little piece of heaven, the OT asked me a number of questions about my sensory diet. For some reason, I was able to rattle off a list, even though I hadn’t made one on paper yet. Here’s my sensory diet, so far:

1. Using a 15-lb weighted blanket when I get home from work and when I go to sleep at night.
2. Using a 4-lb or an 8-lb weighted vest when I need to ground.
3. Holding onto a velvet skirt and scarf, touching them with my hands and rubbing them on my face.
4. Bicycling on a stationary stand.
5. Playing with a gyroscope on a wire track, watching it spin around and around.
6. Playing with a magic wand that has spinning lights.
7. Watching my spoon mobile spin around and around.
8. Working on art projects–bending wire, putting things together and taking them apart, and watching them spin and sparkle in the light.

When I started feeling better, I got out from under the blanket and we worked on some exercises for me to do at home. These included therapeutic brushing, drawing an infinity sign, and lying on the floor watching a spinning mobile.

Therapeutic Brushing
My OT told me to try therapeutic brushing, twice a day, on my arms and legs. The purpose of the brushing was to “wake up” the nerves in my extremities, with the aim of helping to reduce my tactile defensiveness. She warned me that if I have any trauma issues, the therapeutic brushing might start unlocking memories in my body and generally erode my defenses. The brushing can also be very over-stimulating, even though it is supposed to be calming.

At first, the brushing at home seemed to go well, but very quickly, I began to resist it. I felt myself getting more and more anxious and over-stimulated as the week went on, and I began to feel somewhat raw and undefended. I came to the conclusion that after many years of trauma recovery work, I’ve stripped off as many defensive layers as I need to. The remaining ones are necessary and I’m not willing to mess with them. So, I stopped the brushing midway through the week.

Drawing an Infinity Sign
We worked on having me draw an infinity sign, tracking the pen with my eyes without moving my head. I found this exercise a bit frustrating. The purpose was to help me train my eyes to work independently of the rest of my body, with the aim of diminishing the dizziness from my gravitational insecurity.

I noticed that I when I used my left hand (my dominant hand) to draw, I tended to stare at the dot at the center of the sign and track the rest with my peripheral vision. When I consciously tried to track, my eyes seemed to go faster than my hand. When I switched to my right hand, however, I was able to synchronize my eyes with my hand, perhaps because I had to concentrate harder when I used my non-dominant hand. It’s also possible that my left brain is my visual center. I am the left-handed daughter of a left-handed mother, and that can mean that the typical functions of each hemisphere are switched. In any case, drawing with my right hand seemed to click.

Watching a Spinning Mobile
I was supposed to lie on the floor in my loft, watching my mobile spin and tracking the circle without moving my head. I tried it. Once. I immediately got nauseous and dizzy. I didn’t try it again from the floor. I can watch it spin nicely at eye level, so I’m sticking with that.

© 2009 by Rachel Cohen-Rottenberg

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

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.