Archive for Friendship

Getting Off the Wheel: How to Be Autistic and Deal with It Already

September 27, 2009 Rachel Belonging, Communication, Friendship, Loneliness, Spectrum Pride

I know I’ve written lots of posts with all kinds of ingenious solutions to the various sensory, emotional, social, spiritual, and logistical challenges of my autistic life. And yes, I’m a very creative person when it comes to thinking this stuff up, and I always live in hope that this time (as opposed to the innumerable other times), my wonderfully ingenious and creative solution will take care of whatever the problem du jour happens to be.

Well, my friends, I’m terribly sorry to have to inform you, but after 51 years of alternating between innocent hopefulness and complete desperation, it’s time to get off the wheel. I am who I am, and my life is my life. Some things will never change. Ready for a list? Of course you are!

1. I am invisible to the average person.

Yes, it’s true. I am just under 5’1″. I weigh almost 110 pounds. I have a head. I have a torso. I have two arms, two legs, ten fingers, and ten toes. I have mass, weight, and occasionally, momentum. I am a carbon-based life form. And yet, most people cannot see me, even when I am standing right in front of them.

Don’t ask me to explain it. I have lots of creative ideas for why it happens—I put out weird social signals, blah blah blah—but those ideas just don’t cut it when you consider the fact that I am actually an incarnate being. 

A case in point: Last week, I needed to get a ride to a 6:00 pm appointment. Because Bob was not going to be home, I called a friend a few days before and asked whether he could give me a lift. He was so happy I’d asked! I was so happy I’d asked! He said, “Sure! I’ve been wondering what I could do to help.” So, we planned for him to pick me up at 5:30 on Monday evening.

The appointed time came, and I sat on the porch to wait. It was 5:30. Then, it was 5:35. Then, it was 5:40. Uh oh. Had he forgotten?

I called. He picked up. He said, “Oh, my God! I forgot. I remembered this morning. Then, I forgot!”

To his credit, he got right in the car and came over. He also apologized profusely, and because he is a very nice person, I said lots of things to help him feel better, like “Hey, that’s okay, I have to practically tack a list to my forehead to remember anything!” But inside me, in my heart that broke one more time, I had that old familiar feeling of being invisible. After all, my friend had made lots of arrangements to see my husband for dinner, and he’d never forgotten any of them. This arrangement was the only one we’d ever made, just him and me, and he forgot.

Again, I have no explanation. I appear to phase in and out of people’s memories in the same way that I phase in and out of their fields of vision. It’s one of the great mysteries of creation. Why I’m not included in the Guinness Book of World Records or Ripley’s Believe It or Not! is beyond my comprehension.

2. Most people think I’m strange.

I know, I know. It seems impossible, but it’s true. Inside, I feel pretty goddamned normal, and even a little boring, but most of the world considers me an odd, autistic duck.

Quack.

3. I cannot connect with most people.

I try. I do. Like crazy. Why else do you hear all of those words spilling out of my mouth? Yeah, I know, they don’t help me connect. They tend to make people smile and back away slowly.

And yeah, I know, I could shut the hell up, but shutting the hell up doesn’t help either. I shut the hell up, and then I get to hear about everyone else’s life without getting a word in edgewise. It’s exhausting. And it pisses me off no end.

Now, bear in mind that I’ve read about the path of moderation. I’ve spent a lot of time trying to find the middle ground. I’ve watched so-called normal people operate, and I’ve tried to emulate them. My husband is particularly good on the moderation thing, and for many years, I tried to mimic his rhythm, his words, his affect. Guess what? Are you sitting down?

It didn’t work.

4. People tell me what a marvelous, spiritually evolved, loving, peaceful, giving, friendly, hard-working, and intelligent person I am, but no one asks me to lunch.

How is that possible? Does my spiritual radiance overpower them? I have no idea.

5. People ask my husband what they can do to help, but they don’t ask me.

Isn’t that odd? Oh, yeah, right. I’m invisible. You can’t look into my eyes and ask what you can do for me—I mean, not without looking like you’ve lost it.

Of course, you really shouldn’t be asking anyone what you can do to help an invisible person anyway—unless you are committed to the idea of making the person visible. But then again, if you were committed to that idea, you wouldn’t ask my husband how to help. You’d just pick up the phone and call me, or send me an email, or walk over and engage me in a conversation.

6. People tell me that they want to get together, but oftentimes, when I suggest a time, they don’t respond, and I can’t understand why.

Because he is a wonderful person and likes to think the best of people, my husband tries to explain these things. The problem is that every explanation comes down to “That’s just how it is.”

Yeah, I know that’s how it is. That’s why I brought it up in the first place.

7. When I write blog posts and don’t get much of a response, I feel sad and disappointed, and then I kick myself in the ass for being such a baby.

Come on, you other bloggers. Admit it. You KNOW you feel that way. Sometimes.

8. I try really, really hard to accept having only online friends, but I still crave a 3-D friend, big time.

9. I am afraid to reach out to people, because I’ve gotten disappointed so many times, but then I get pissed off when no one calls.

Yeah, okay, I admit it. I want someone to look at me and say, “Oh, my. That person is in distress. I must help. I will ask her how to help. And then, I will actually do at least one thing she suggests.”

You may say I’m a dreamer, but I’m not the only one…

10. I actually have moments in which I believe that if I just explain all of these things to your average human being, he or she will understand.

…I hope someday you will join us, and the world will live as one.

I’d like to accept this state of affairs. I really, really would. I’ve had enough great ideas blow up in my face that my body and soul feel like they’re trying desperately to wave a white flag and surrender. They want to negotiate a truce. They’ll take whatever terms I give them, so long as I stop coming up with Great Ideas That Will Solve Everything. They’re tired of the disappointment. They’re tired of watching my autistic mind spin in circles, trying desperately to find a way out of being an autistic mind.

And I’d really like a truce. I would. I just haven’t written enough hopeful letters to people who can’t understand, or cried enough bitter tears over how lonely I feel.

But I’m getting there. I can’t stay on the wheel forever.

© 2009 by Rachel Cohen-Rottenberg

30 comments

OMG! OMG! OMG! I’m Making a Friend!

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

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

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

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

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

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

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

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

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

Oops.

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

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

I think so. I hope so.

© 2009 by Rachel Cohen-Rottenberg

20 comments

Places to Go and People to See

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

16 comments

Dreams

July 10, 2009 Rachel Anxiety, Belonging, Childhood, Community, Friendship, Grieving, Loneliness, Sensory Processing Issues

Dreams

Hold fast to dreams
For if dreams die
Life is a broken-winged bird
That cannot fly.

Hold fast to dreams
For when dreams go
Life is a barren field
Frozen with snow.

                –Langston Hughes

Thank you to everyone for your love and support after my last post. Every word means so much to me.

Not surprisingly, I’ve just come out of another bout of grief and tears this morning, feeling the impact of so many dreams that have died. Certainly, some of my dreams have come true, and my grief in no way diminishes my gratitude. But right now, the grief is hitting me like a tsunami. Every day is a constant process of letting go of dreams that have propelled me all my life. I thought I’d let go of all the big ones, but I’m still hanging on, and I have to stop. Hanging on just brings me heartache.

I’m going to write about the dreams I’ve come up against today. Writing helps me feel like I have some control over what’s going on, but please don’t take this piece as any kind of indication that everything in my mind feels orderly and precise. At the moment, I’m feeling about as burned out and confused as I’ve ever felt in my life.

Where Did the Past Go?
This morning, I was sitting in the kitchen window, looking out at the orange lilies in the next-door neighbor’s yard. The light was dappled by the chestnut tree, and the shaded yard nearly had a feeling of autumn about it. But it’s not autumn, and what I was seeing was a memory from when I was a child. The only flowers we had were the same type of orange lilies; they grew by the side of our house. I had a very strong sense memory of being a little kid, living in that house, running around with my brother, feeling like everything was okay. Of course, most of the time, I didn’t feel like it was okay. Most of the time, I was anxious and fearful. But on a Saturday morning in summer, when all we had to do was go down to the drugstore, buy baseball cards and candy, and spend the rest of the day playing baseball, or wandering in the woods, or pretending to be Batman and Robin, life felt like it ought to feel—happy, hopeful, innocent.

My dream was that it would stay that way, and that my brother and I would always be close, but of course, that didn’t happen. My parents are gone, and my brother is lost to me. For the sake of his privacy, I won’t go into details, but suffice it to say that he is not someone I want to know anymore (and he appears to feel the same way about me). How we started out being innocent and happy, and ended up where we are now, is hard to explain. I could tell you everything that happened, but it would never be the whole story, because the whole story is not a collection of events, but the complex working out of pain, fear, love, anger, and confusion. It feels like my original family got put into a centrifuge, and each of us got spun out in different directions, never to return. It’s overwhelming for me, and unbearably sad. I want those days back. I want that dream back. I want to make it all work out just fine. But it’s all over. I can’t change any of it.

I’m Not Who I Was Supposed to Be
I was reading an article today on the Internet, and I noticed that the author was the daughter of my childhood piano teacher. Her name stood out to me because of a particularly sweet childhood memory. One day, while I was at my piano lesson, playing a piece that I was going to perform in Boston, the author and her sister, ages 2 and 4, were standing on either side of the piano bench, jumping up and down, screaming their heads off. When I was done with the piece, my piano teacher said, “If you can play a sonata through THAT, you can play it anywhere!”

So, today, I did a little bit of searching about what this woman has been doing with her life, and it turned out that before writing a well-reviewed book, she had been a producer for Dateline NBC. That’s when another level of grief hit. You see, I was a really smart kid. I mean, really smart. I taught myself to read. I got all As in school. I nearly aced every SAT and college board I took. I was gifted in music. I won a statewide piano contest. I got into an Ivy League university. I was supposed to be successful. I was supposed to be a producer, a director, a musician, a lawyer, a doctor or Anything Other Than What I Am. That was the dream, and it guided my entire childhood and adolescence. Now, I look at people who couldn’t do what I did when I was just a kid, and I see that there is no way I could ever do what they’ve done as adults.

Every now and then, I torture myself by going online and searching for the names of people from high school, just to see what they’re doing. It’s unbelievable what people are doing. They’re out in the world being important and successful. I keep asking the question: How can people have surpassed me like this? I never expected to be famous, but I once was full of promise. Could I have ever worked at the jobs they have? No way. I know it. And yet, I can’t quite grasp why not. I know that raw intelligence isn’t everything. I know that I don’t understand (or respect) social politics. I know that I get overloaded in groups of more than two people (and sometimes even that’s a stretch). I know all these things, but I still can’t quite accept what’s happened. The gulf between who I was supposed to be and who I am is so deep and so wide that my mind can’t take it in and make any sense of it.

It’s like looking at someone who has died. How can the person be alive one moment and gone the next? The mind can’t go there. You want to say to the person, “Just wake up.” You want to see where the person has gone off to. But you can’t. And that’s what’s happening to me. I still see myself as that person with the dream of doing Whatever She Wants, but I’m not that person. That person is gone. Where did she go, and when? At this point, I’m so sensitive to everything, I can barely go outside my door. 

What Could Be More Important than the Approval of Others?
When I was in high school, I was determined to be one of the cool kids. Of course, I failed miserably, but what did that matter? There were other kids I could have hung out with—the ones everyone made fun of because they were shy and awkward and carried slide rules and pocket protectors. I liked them just fine, but I saw what they had to put up with. I saw the cruel things that people wrote in their yearbooks. I saw how people laughed at them every day. I saw that they were perpetual outsiders, and I fled from them because I wanted to be an insider.

So, as I got older, I straightened my hair, lost weight, wore conventional clothes, and tried to become acceptable. I’ve never stopped. I’ve been trying and trying and trying to be one of the cool people. I have a million faces, and I have a million clever things to say, all in the service of not wanting to be laughed at and rejected.

I cannot be weird. I cannot be an outsider. I cannot be looked upon as an oddity or a freak. I must be like everyone else. Those were my prime directives in life, and I once dreamt that I could fulfill them.

Guess what? Game over. Bye bye to that dream. See ya. Nice knowin’ ya. And no, you can’t ever come back.

You Mean You Don’t Want My Energy for Free?
When my daughter first started school, she was in the eighth grade, and I offered to volunteer at her school as a tutor. It’s a small school, and all the teachers wear many hats, but they didn’t want or need my help. Of course, they didn’t say it outright. They said, “That’s a sweet offer” and then proceeded to ignore me. Who knows why? Am I too smart? Too direct? Too weird? I don’t know. Once the homeschooling was done, I was hoping to use my skills as a teacher, and I was offering them for free. But no one ever took me up on it.

At this point, I wouldn’t be able to help out at the school because of my sensory issues, but it still hurts that I never got the chance.

Seeking My Fellow Aspies and Auties
Okay, now that you’ve come this far, let me get to the latest and greatest dream-that-must-die. Remember the school for autistic young people, where the person was so excited to get my offer of serving as a volunteer? Where she said that they were completely open to my needs around sensory issues? Remember that? Sounded good, didn’t it?

The last email I sent them was on June 24, suggesting that we get together on June 30. That was over two weeks ago, and I haven’t heard a word—not even to say, “I’m sorry, June 30th won’t work, but how about some time in July?”

Now, I tried really, really, REALLY hard to not get my hopes up about this school, because things just generally have a pattern of not working out in rather mysterious and inexplicable ways. But, the truth is, I had my hopes up, big time. It wasn’t just about having something to do. It was about being around autistic people. Since then, I have found another Aspie in town, and we are emailing, but other than that, I have no local contact with anyone autistic. There are groups in Northampton and Amherst and Keene and Springfield, but I don’t live in any of those places, and I can’t possibly drive there and expect to have any energy left when I actually arrive.

So yeah, okay, I had my heart set on being at the school. I could walk there and be among some autistic people. Oh well.

I keep wondering what I’ve done wrong, and why people don’t want my energy when I’m willing to give it for free. Am I too direct? I’ve only spent 25 years and a gazillion dollars in therapy being told to be who I am and to ask for what I need. So I do, as clearly and as authentically as possible, and voila! I still get left by the side of the road. I’m a perpetual outcast. It’s really unbelievable. It would be okay if I loathed people and wanted nothing to do with them, but I love people and I want to help them. I just keep hitting the big brick wall that everyone else seems to see but me.

I just don’t understand. I try to be NT: no dice. I try to be myself: no dice. I try to be direct: no dice. I try to be gently patient and encouraging: no dice. I try to be super-competent: no dice. I try to acknowledge my challenges: no dice.

I would really like to get together with my new Aspie friend in town, but to tell you the truth, I’m scared. It seems like everything I touch in the outside world magically screws up. I keep thinking that there would be no social pressure with another Aspie. I keep thinking about how relieved I would feel to actually meet her in person. But I’d probably just cry for much of our first meeting, and whoops! another person gone.

So it’s hard to dream about anything that concerns other people. And I don’t want to be alone. So my life feels pretty awful right now.

Bob keeps saying that I just have to keep letting go of the dreams that don’t work so that other dreams can take their place. But I’m not sure I can bear any other dreams. They break my heart. If I could understand why things don’t work out, maybe I could change what I’m doing, but I don’t understand it at all.

© 2009 by Rachel Cohen-Rottenberg

15 comments

Life as a Child on this Strange, Strange Planet

June 8, 2009 Rachel Childhood, Friendship, Girls and AS, Literal Thinking

When I was six years old, I made my first friend. Her name was Debbie, and she lived across the street from my house. We were the same age and immediately bonded over riding our bicycles together. I’d like to be able to say that we had an idyllic time, but the other neighborhood kids made sure to initiate us into the harsh realities of living on planet Earth.

There were some older boys at the end of the block who liked throwing sticks at our tires. I couldn’t understand why. What kind of fun is that? I figured that whatever their reasons for this absurd game, they’d get sick of it after awhile. So Debbie and I just kept going around the block, gamely riding through the gauntlet of flying sticks, until it was time to go home for dinner.

But the game continued, day after day, and showed no signs of stopping. I began to feel frightened—frightened not by the boys, but by my inability to understand what they were doing. When I told my parents what was happening, they became upset and told me that the boys were trying to knock us off our bikes. When I heard that, it was hard for me to fathom. It was the first time I’d ever experienced another child being cruel to me, and it just made no sense.

I am still that way today. I have been through so much cruelty in my life, and yet, any kind of cruelty shocks me. In fact, the shock is worse each time. The revulsion I feel is physical.

There was another boy who liked to scare me while I was riding my bike. He would stand out in the street and say “Stop in the name of the law!” So I stopped. Why? Because he said so. Literal me. I wasn’t any better at understanding deception than I was at understanding cruelty. I just took him at his word.

Once I’d stopped, he’d say “Can I see your license, please?” When I told him I didn’t have one, he’d say, “Well, then the police will come and throw you in jail!” I’d be so scared that I’d run into the house, shaking.

The game went on for a few weeks before my mother figured out a solution. She got a key chain with a replica of a small license plate and told me, “Next time he stops you, show him this.” So I did. And it worked. He never bothered me again. I was quite pleased.

But I still don’t understand. I don’t understand any of it. I’ve heard every explanation in the book, but I’ll never be able to feel inside me why someone would try to knock a six-year-old kid off a bike, just for fun.

© 2009 by Rachel Cohen-Rottenberg

9 comments

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

12 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

6 comments

Coming Out as an Aspie

March 11, 2009 Rachel Communication, Friendship, Marriage

Ever since my diagnosis in November, I have been struggling with the question of telling people that I have Asperger’s. In the beginning, my husband told his father and his brother, and they were very supportive. Soon thereafter, I told my daughter. Her main response was surprise. She had met a boy her age with Asperger’s, and his presentation was very different from mine. I took the conversation as an opportunity to talk about how male and female Aspies present differently, and to share the strategies I’ve used to make my way through the world as an adult. We had a great talk.

At the outset, I also emailed two of my oldest friends, one who lives in Minnesota and one who lives in Utah. They were completely supportive, and still are.

Having no problem with extremes (when they don’t involve visual, auditory, tactile, or emotional stimuli), I then made the transition from telling my closest friends and family to telling anyone with a computer and an Internet connection. I didn’t start my blog as a coming-out project, but once I decided to blog under my own name, it soon became one.

Oddly enough, I haven’t felt anxious about tossing my anonymity to the wind. It feels very liberating to stop hiding who I am, and writing is my natural medium. When I write, there are no visuals to distract me, no eye contact or processing delays, and no possibility of visual or auditory overload. I have time to clarify my thoughts before communicating them. It’s ideal. While other people decry the fact that the Internet is taking the place of face-to-face communication, I am very grateful for a medium that allows me to make friends and interact with people without becoming overwhelmed.

Of course, as an Aspie, the middle ground is always the most difficult for me to locate. Telling all the people who reside somewhere on the continuum between close family and total stranger has been a challenge.

I decided to begin by sending an email to my friends Kim and Dave. They are wonderful people who have invited my husband and me over for dinner many, many times. We have always put them off and I began to feel that I should tell them why. I really love them and want to spend time with them, but the sensory overload of more than one person at a time is so difficult for me that I haven’t been able to do it.

The email I sent explained about the Asperger’s and my associated sensory processing issues. I also included a link to my blog. When I didn’t hear from them immediately, all my fears started surfacing. Were they upset because I’d used email rather than meeting in person? (I’ve had that experience before.) Were they overwhelmed by all my words? Were they writing me off as broken or weird? I should know by now that most people need time to read and digest new information, but I often forget that essential fact.

After about a week, I got an email from Dave. He began by expressing his shock at learning about my autism, for which I couldn’t blame him, because I was pretty shocked when I first discovered it, too. Then he wrote the following:

“I sense this is really amazing for you, to be able to understand and make sense of so many parts of your life…It seems truly great that you’ve been able to learn, find support, and process accordingly, setting up the limits and structures that fit you…Reading through your blog entries, I’m struck by your amazing courage at facing this and exploring deeply. It seems like you’re creating a re-alignment of sorts for yourself. What a lot to process and assimilate…All the best as this major new development unfolds in your life. I look forward to finding the new ways for us to stay connected over time.”

After getting such a great response, I took the next step of sending email to a wider circle of friends. Almost everyone responded and all the responses were positive. Here are some examples:

From Jim: “You really are something else! How many people have I ever met who are diagnosed with anything and see it as a gift…I so enjoyed reading this and learning.”

From Liz: “What an amazing revelation! And to have made this discovery after all these years—how remarkable how you say the pieces now all fit together. Thank you for sharing this with your friends. I’m looking forward to reading your blog and talking to you more about this next time we get together.”

From Sue: “I feel so honored to be included in your discoveries. I have been reading little bits of your blog daily and love it…[I] wanted to let you know I received your gift and send you hugs.”

From Irene: “Little by little, over many days, I made my way through this journey of your life’s discoveries and am so happy that you have been able to pull, as you put it, the missing pieces together. A good many diagnosis causes depression and despair, this diagnosis has been a blessing.”

I’m discovering that my friends really love me. Wow.

I’m also finding that I still resist getting together with them. For instance, I’ve been trying to find a time to meet up with my friend Ramon. He knows about my Asperger’s and sensory processing issues, and he has been very kind and supportive. With winter and flu season in full swing, it’s been difficult to get together. As the snow thaws, though, I want to make plans with him, but I find myself very anxious about seeing him in person. Though it’s been many years since we’ve gotten together, he’s the last person in the world I should worry about seeing. He’s one of the kindest and most genuine people I’ve ever met.

So what’s the problem? Being seen in person, now that my secret is out, feels very difficult. Being held in another’s gaze is so hard for me. I’ve spent most of my life trying to hide under a mask of competence, intelligence, and limitless energy. Now that the mask is off, I’m afraid of being seen. I lose sight of the fact that the only person in the world who feels ashamed of me is…well, me.

What am I ashamed of? I’m not sure. It’s more a habit than anything else—a habit begun in childhood, when everyone had such high expectations of me and I was afraid to admit that I couldn’t do the simplest things. I’ve kept the habit going in adulthood, as I see so many of my former classmates do great and important work in the world while I struggle to get through each day.

After all these years, I still catch myself feeling that I’m supposed to be someone else. It’s a hard habit to break. My family and friends, however, seem quite happy with who I really am. They seem to feel that I am just fine.

I should get into the habit of taking their word for it.

© 2009 by Rachel Cohen-Rottenberg

18 comments

Women, Girls, and Asperger’s Syndrome

February 22, 2009 Rachel Childhood, Diagnosis, Friendship, Girls and AS, Women and AS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

20 comments

Aspies and Friendship, Part Four

February 5, 2009 Rachel Friendship

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

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

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

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

There was more light in the darkness than I realized.

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

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