Archive for Belonging

Toward a New Sense of Belonging, Part 4: What’s Next?

May 21, 2009 Rachel Anxiety, Belonging, Communication, Community, Friendship, Sensory Processing Disorder (SPD), Sensory Processing Issues

What’s next? I have no idea. I’d hoped to say something comforting and insightful about where to go from here, but I’m full of profound sadness, loneliness, and doubt today.

I’m looking back at all the times that I thought, “This time, everything will be okay. I’ll just change my house/neighborhood/community/job/synagogue/therapist/diet/exercise program, and I’ll fit in. I’ll belong. Everything will be all right. All this struggle will be done.”

Onward and upward and all that jazz. Living in the land of hope, where my therapist told me that I was going to soar. She gave me so much hope. I can’t blame her. I imagine it’s worked a time or two for other people.

But it didn’t work for me. And in these last few days, I’ve realized that I’ve spent my whole life trying to be an NT, and that working like crazy at my therapy was part of it. Now that I can’t be an NT, what do I do? I only know what I can’t do. I can’t go to my daughter’s concert tonight. I’d give almost anything to leave the sensory overload at home and be there. She and her best friend are not just in the chorus; they’ll be in front, singing their hearts out.

But I can’t go. The sensory overload would happen in the first five minutes. My stepson is taking a video of the whole concert to distribute to anyone who wants it. So, I’ll get one of those and at least get to see the performance that way, but…still. You know.

Last year at this time, we had just moved to Vermont, and I had all kinds of plans. I was getting dressed up for work, going to the movies, going out for dinner, chatting with the neighbors, and feeling like I was finally standing in the sunshine. I thought that the hard times were over, at least for a little while.

But it didn’t work out that way. Six months after we moved here, I got the AS diagnosis, and its implications are all hitting me very hard right now.

I feel so bad for Bob. He didn’t sign up for this ASD stuff. He didn’t sign up for a wife who goes shopping at the co-op for a half hour and then needs to lie down under 30 pounds of weighted blankets for the rest of the afternoon. He didn’t sign up for a wife who is afraid to try going to the movies anymore because the sensory overload of the sound, the visuals, and the people is so difficult to bear.

He says it’s all fine, that he doesn’t think anything is wrong with me, that he loves me, that he’s so happy with me, and that I do so much for him, even though I can’t see it. He says that he did sign up for all of this, for every bit of it, because that’s what marriage is about.

I know it’s true. And I know that if the roles were reversed, I’d feel just as he does.

But, still, it wasn’t supposed to be like this.

So, where do I go from here? Through the fog and the haze, I can see that there are situations that give me some sense of belonging, although with each of them, I feel very limited in what I can do:

1. Living in our neighborhood.

The positives: I like living on our little one-block road with very friendly, kind neighbors who respect one another’s privacy and don’t play loud music. That soothes me. It’s reassuring that I can have some nice conversations, so long as it’s between me and one other person.

What’s not so great: When a neighbor comes over to chat with both Bob and me, and I can’t keep up. Then, I don’t feel soothed. I feel sad. I watch the whole interaction take place, and I can see that the other two people are connecting in some way I can’t grasp, and that I’m out of sync. It feels truly and painfully awful, like I’m in some sort of invisible time capsule that no one can see but me.

2. Going to my volunteer job

The positives: Everyone seems to be very accepting of quirky people, and I’m becoming quirkier with every new day. People genuinely seem to like me there, even though I feel completely “other” all the time.

What’s not so great: Last year, I went there looking for friends, and somewhere down the line, maybe even paid employment. Now, I just go there, do my two-hour shift, try to be friendly and helpful, feel overloaded, come home, lie down under weighted blankets, and hope like hell that my nervous system calms down sometime before the weekend.

3. Connecting with people online

The positives: I love writing this blog, reading people’s comments, getting emails from readers, and responding to them. I also love reading other people’s blogs. I have made my first Aspie friends in the past year, people with whom I correspond by email on a regular basis.

What’s not so great: It all feels so…virtual. Except for a few photos, I don’t know what anyone looks like. And I definitely don’t know what people sound like. Although my visual and auditory systems can get overwhelmed, they also help me feel reassured, especially when it comes to belonging. I’m an artist and a singer. I love visuals and sound. They just have to be the right ones.

So, I’m left having to take a very, very big leap of faith that there are people out there:

a) whom I’ve never met in person,
b) whose names, in some cases, I don’t know,
c) who feel just as I do,
d) who accept me for who I am (whoever that is), and
e) who comprise an online autistic community, to which I belong.

Do I have that right? Is that what everyone else is attempting to do? Help me out here. This requires a huge leap of faith for me. I’m not good at those. (It’s the feeling of weightlessness that comes with the leap. So often, it’s been followed by a crash.)

And of course, as I write this, I’m thinking, “I hope these people don’t think I’m completely nuts. Should I even say all this?”

Yes, I should say all this. After all, it’s real.

I’m not the only one who feels these things—am I?

© 2009 by Rachel Cohen-Rottenberg

14 comments

Toward a New Sense of Belonging, Part 3: Avoiding Past Mistakes

May 20, 2009 Rachel Belonging, Communication, Community, Gravitational Insecurity, Sensory Processing Disorder (SPD), Sensory Processing Issues

As I reflect on my search for belonging, I notice that in very different situations, I’ve made many of the same mistakes. And so, in good Aspie fashion, I’ve decided to make a list of these mistakes, along with some examples, so as to impress them more deeply into my consciousness.

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

6 comments

Toward a New Sense of Belonging, Part 2: My Experience in Organized Religion

May 18, 2009 Rachel Belonging, Community, Social Gatherings

When I left academia, I began working in the corporate world as a technical writer. I felt a certain sense of belonging there, but after watching layoff after layoff, I realized that all of it could end abruptly. So, I learned not to get too attached to any job.

At around the same time, I started giving more attention to my spiritual life. I had always had very deep spiritual yearnings, but my parents had been atheists, and I had no spiritual language. Because my family was culturally Jewish, I decided to explore my spiritual life through Judaism. I was hopeful that doing so would lead me to a community I could call my own.

When my daughter was small, I began going to services at the local synagogue. And, with typical Aspie flair, I immediately pulled out all the stops. I brought home tons of books. I learned to lead the services. I started studying Torah every day. I was involved in several community service projects. I became more observant at home. And I took my daughter to just about every Jewish event I could find.

In short, I was determined to do everything “right,” convinced that if I did, I’d finally find the key that would open the door to a world of belonging. Of course, in the midst of my zeal, my very good instincts were warning me that maybe, my whole approach might possibly, by some statistically insignificant probability, lead me in the wrong direction.

But I didn’t pay much attention to my instincts. My need to belong blinded me to just about everything else.

Ultimately, of course, I figured it out. I learned that doing everything “right” didn’t get me what I wanted. In fact, it only exhausted me, angered me, and led to my fleeing with what was left of my sanity. In other words, I pretty much repeated the pattern I’d played out in academia, except that this time, I put much more of my heart into it.

In dialogue form, here’s how it went, from the moment I walked in the door, until the moment I left, a year and a half later:

Me: “Hi, I’m Rachel, and I really want be part of your community.”
Other person: “Hi, Rachel, and welcome. We hope you’ll be comfortable here.”
Me: “THANKS. WHAT A GREAT PLACE. I’M SO HAPPY TO HAVE FOUND IT!”
OP: “It’s very nice to meet you, too. So, will you be committing to an individual or a family membership?”
Me: “A family membership! Definitely! You know, I really love this place, and I want to be part of it!”
OP: “And we want you to be part of it.”
Me: “Thanks! I’m going to start learning the services here.”
OP: “Wonderful! You know, when the rabbi is on sabbatical, we’d love to have you help lead services. Would you like to do that?”
Me: “YES! I WOULD LOVE TO! VERY MUCH!”

[A few months go by.]

OP: “Wow, we really love the way you lead services. You should do it every week!”
Me: “Thanks!”
OP: “And by the way, your daughter is beautiful. We love seeing her up there with you.”
Me: “Thanks!”

[A few more months go by.]

OP: “You know, you can’t have your daughter up there with you when you lead services.”
Me: “Why not?”
OP: “Because she plays with her dress and walks around up there.”
Me: “But she’s so joyful. People always tell me how much they love to see her singing the prayers.”
OP: “Well, I don’t know about that. It looks to some of us like you’re not taking things seriously.”
Me: “What? How can you say that?”
OP: “You guys seem to be having too much fun up there. You’re being frivolous.”
Me: “What?”
OP: “I’m afraid your daughter will have to sit down in the congregation while you’re leading.”
Me: “What? She’s only 4. She loves being here, but she can’t sit without me the whole time. She’s too little.”
OP: “Well, then you can’t lead services anymore.”
Me: “What? How can you take that away from us? We haven’t done anything wrong.”
OP: [blank expression]
Me: [look of shock and disbelief]
OP: “By the way, do you keep kosher?”
Me: “What?”
OP: “Do you keep kosher?”
Me: “Well, um, sort of…I’m a vegetarian.”
OP: “Well, you know, there’s a lot more to it than that.”
Me: “Okay.”

[A few more months elapse.]

OP: “Hey! Your kid can’t draw with crayons on Shabbos. No drawing allowed.”
Me: “But it helps her occupy herself during services every week.”
OP: “Yes, but that’s the rule.”
Me: “But this isn’t an Orthodox shul. What are you TALKING about?”
OP: “Oh, for goodness sake, what about Legos? Why can’t you just bring Legos? Why can’t parents JUST BRING LEGOS?”
Me: “My daughter doesn’t like Legos.”
OP: “You know, if you want to be part of this place, you’re going to have to start following the rules and stop being so frivolous.”
Me: “Frivolous? Moi?”
OP: “Yes.”
Me: “I’m not being frivolous. I take Torah very seriously. And I try to bring a lot of joy to it. I thought that was the point.”
OP: “What gave you that impression?”
Me: “The prayer service. The teachings. My experience of G-d. What am I missing here?”
OP: “You need to fit in better, stop asking so many questions, and stop taking everything so seriously.”
Me: “I’m taking things too seriously? I thought you said I was being frivolous.”
OP: “Stop twisting my words.”

[A few months later.]

Me: “What’s going on in this place? There aren’t any children coming to services anymore.”
OP: “People thought they were too distracting.”
Me: “But they weren’t loud. They were just walking around and being with everyone in the sanctuary. Isn’t that what you want? To have children being cherished by the adults in the community?”
OP: “They don’t have to be in the sanctuary.”
Me: “But I thought this was a spiritual community.”
OP: “Oh, for goodness sake. This isn’t a spiritual community. It’s a social club.”
Me: “Oh.”

[At long last, the rabbi comes back from sabbatical.]

Me: “It’s been awful while you were gone. There are no children in the services anymore. If people want to support Jewish continuity, keeping the children out of the sanctuary isn’t the way to do it.”
The rabbi: “I agree.”
Me: “Well, if I’m right, why do I get no support on this issue?”
The rabbi: “Because the people who don’t want children there are the founding members of the synagogue, and you’re not.”
Me: “Do you see anything wrong with that?”
The rabbi: “Yes, of course, but that’s how it is.”
Me: “I have to go.”

I ended up at Bob’s synagogue after this debacle. I’ve already written about what happened there, so enough said about that.

After all these experiences, I’ve learned that many people join religious institutions for the social aspects of community rather than the spiritual ones. There’s nothing wrong with that, of course, if it works for people. But it can’t work for me, because a) socializing exhausts me and b) when other people socialize, it’s so distracting that I can’t focus on why I’m there at all.

So I’ve learned to bring religion home—into my house and into my own being. I haven’t given up on Judaism or on my fellow Jews. I just encounter G-d in my own way, and I practice Judaism in a way that works for my Aspie body, mind, and soul.

I have to start with my neurology, with the way that G-d made me, and live my life from there. It’s the only way I’ll ever find a sense of belonging.

© 2009 by Rachel Cohen-Rottenberg

7 comments

Toward a New Sense of Belonging, Part 1: Why Academia Didn’t Work for Me

May 16, 2009 Rachel Belonging, Community, Friendship

For my entire life, I have searched for a sense of belonging—for a social group, or a job, or an organization, or a community in which I could feel at home. When I first realized that I had Asperger’s, I figured that it was time to give up on the whole idea. Why bother looking for something I could never have? It felt a little surreal to stop searching, but it was also strangely liberating.

Six months later, my need to belong is resurfacing, and it scares me. I have such a strange history when it comes to fitting into groups, a history that I don’t want to repeat. I’ve been reflecting on how to redefine belonging, and I’ve been getting glimmers of how a new sense of belonging might feel. But before I set out on that road, I need to look back and see what didn’t work.

Like many Aspies, I’ve had plenty of mishaps, disappointments, inexplicable dead ends, and moments that I still cringe to remember. But even more perplexing are the times in which I became part of a group, and seemed to make a great success of it, only to leave in a state of outrage and burnout.

My first such experience happened in graduate school. I started in a Ph.D. program in English at UC Berkeley with the aim of becoming an academic. I spent two years doing the required coursework, working as a teaching assistant, and passing the foreign language exams. My professors thought I showed promise, and with their help, I got invited to other UC campuses to attend conferences, lead seminars, and engage in this strange professional ritual called “networking.”

I didn’t know what networking was, but it sounded strangely like socializing, and that wasn’t good. I observed my fellow graduate students closely, however, and learned that networking involved a fair bit of listening intently to inebriated professors in mid-life crisis. Fortunately, none of the inebriated professors ever made an attempt to talk to me, because despite my desperate need to belong, I still carried my bullshit meter in plain view. It would be many years before I learned that a sensitive bullshit meter and professional networking do not mix.

Needless to say, I never did get the hang of networking. My attempts always felt a bit like trying to drive a car by gripping the steering wheel with my teeth. All in all, though, I said enough intelligent things to enough well-respected people that I felt certain I’d find a position as a hugely overworked professor in a place I didn’t want to live. For us, this was success.

In my third year, I began studying for my oral exams. I was to sit in a room with a group of professors, who would ask me a series of complicated and misleading questions, and I would have to come up with clever and knowledgeable answers. For the entire duration of the ordeal, I would not be able to use a pen or a pencil to jot down my thoughts, nor would I have any time for reflection. The whole idea was a bit daunting, but I was still young enough and eager enough to have powered through it if I’d wanted to.

But I didn’t want to. I studied for about half the exams before I decided to write a Master’s thesis as quickly as possible and get the hell out of there.

Why did I leave? There are so many reasons. But they all add up to one thing: My mind and body went into rebellion against the competitive mind games that made up a large part of my academic experience.

It wasn’t just the fact that otherwise self-respecting young women competed for the attention of drunken middle-aged academics. It was the fact that our professors consistently refused to acknowledge our presence in the hallways. It was the fact that every paper we wrote about the great works of literature consisted of a) smugly demolishing the ideas of some hapless academic who wasn’t there to defend himself and b) replacing those ideas, in exceedingly dense prose, with the most bizarre interpretations imaginable.

But by far, the worst competitive mind game consisted of reading, discussing, and applying the work of a group of postmodern nutcases philosophers who came up with a form of certifiable insanity critical theory called deconstructionism. I don’t know whether graduate students are still subjected to this fascist nihilistic propaganda philosophy, but back in the 1980s, it was all the rage. You could not hope for a job in a swamp in Alabama without being able to speak deconstructionism fluently and spar with your fellow academics.

The basic ideas are very simple:

1. Any attempt to create meaning is by its very nature totalitarian, patriarchal, and oppressive.
2. The way to cure humankind of its thirst for meaning is to write absolute fucking gibberish intricately complex prose and force people to read it until they lose their minds become enlightened.

The following is an example. (Don’t try to understand it. Just kind of let it wash over you.)

There are thus two interpretations of interpretation, of structure, of sign, of freeplay.
The one seeks to decipher, dreams of deciphering, a truth or an origin which is free
from freeplay and from the order of the sign, and lives like an exile the necessity of interpretation. The other, which is no longer turned towards the origin, affirms
freeplay and tries to pass beyond man and humanism, the name man being the
name of that being who, throughout the history of metaphysics or of ontheology—
in other words, though the history of all his history—has dreamed of full presence,
the reassuring foundation, the origin and the end of the game. (Jacques Derrida,
Structure, Sign, and Play in the Human Sciences, 925-926)

I don’t know what it means either, but I had to read and make use of hundreds of pages of this mind-numbing garbage theoretical discourse throughout graduate school because everybody said it was so brilliant.

But I knew it wasn’t brilliant. In fact, I knew that it was worse than useless. I knew that emptying life of meaning only creates a vacuum. And then you get fascism. You get Hitler, and Mussolini, and trains that run on time but end up at the crematoria. I used to rail about it to anyone and everyone I encountered. All the time.

As you can imagine, this is the part where my sense of belonging began to wear very thin. Most of my fellow graduate students listened to my rants with bemused expressions and said things like, “Yeah, wow, you take all this stuff so seriously. Excuse me, but I need to go read some more Derrida and fall into a chasm of utter hopelessness.”

There’s no explaining people. But when Time Magazine published an article revealing that a deconstructionist named Paul de Man had written virulent anti-Semitic propaganda for the Nazis in Belgium, I felt thoroughly vindicated. While everyone else was studying diligently for their oral exams, I sat with my feet up on a table, waving the article around, shouting, “You see, you see? Fascism!”

Exit graduate school. Some things just aren’t meant to be.

© 2009 by Rachel Cohen-Rottenberg

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