Journeys with Autism

As most of you know, I volunteer for a thrift store that benefits the local area hospice. Several weeks ago, I told the store manager that I sew, and since then, I’ve been up to my elbows in different kinds of mending and restoration projects. I even bought a sewing machine to help the process along, although I sew by hand when mending quilts that are hand stitched.

A couple of weeks ago, the store manager showed me some chair cushions that she wanted me to re-cover, so we started with the ugliest ones. They are (or should I say, were) ugly in a kind of 1970s polyester way. At first, I tried replacing the material altogether, but then decided that it made more sense to sew new material onto what was already there. For the front and back of each cover, I used my sewing machine. For the side panels, which had to be sewn around a zippered opening, I sewed by hand. Here is a picture of the two covers. The one on the right is the original, and the one on the left is my beautification of it:

Yes, the border around the original was made of a kind of tinsel-like gold color that should simply be illegal to use in a home furnishing. It’s an affront to the senses. When I wasn’t working on the covers, I had to hide them under other material in my loft so that I couldn’t accidentally catch sight of them.

I brought the finished cushions into the store yesterday, and the manager was so happy with them that she brought the chair up right away to sell. When I went in today to take a picture of it, I learned that it had already been sold, but was being held for pickup downstairs. So I went down and took some photos of it. Here’s the best one:

I love doing this work, and the people at the store are nearly ecstatic about it. Everyone seems to have adjusted to my not talking or hearing, and they are very appreciative of what I do. They write me notes, show me what to do, and treat me with a lot of kindness. I’m getting less and less self-conscious about my headset and my silence, and more and more able to rest easy in the knowledge that I use them to work with my disability (in the same way that I would use a wheelchair if I couldn’t walk).

It’s good to feel part of something again. It’s been a long time coming.

© 2010 by Rachel Cohen-Rottenberg

When I first started therapy (in 1983), I learned that I had to work on improving my self-image. I learned that I had low self-worth, and that if I worked very, very hard, my sense of self-worth would improve.

And it did. I think. At least, I was under the impression that it improved, because I was feeling ever more confident about my abilities as a working woman, a wife, and a mother.

But now I’m experiencing a new phenomenon. I no longer have low self-worth. What I have is no self-worth. At all.

That’s right. None.

I am not exaggerating. Last night, I looked at myself and realized that there is a big empty space where my self-worth ought to be. How my self-worth snuck off without my noticing is beyond my comprehension. But it’s gone. I’ve looked, and it just ain’t there.

Perhaps it went like this: Seven years ago, when I married Bob, I quit my full-time job to become a full-time homeschooling mom; then, a few years later, my daughter went to regular school, and the homeschooling ended. So, in the past seven years, two of the most important ways that I built my self-esteem have gone away: working at a job and homeschooling Ashlynne. During much of that time, I lived in a community that was not very welcoming to me (to put it mildly), and that experience further contributed to my self-esteem issues.

But, you see, I still had “self-esteem issues.” There was some self-esteem with which to work. Now, it’s just up and left.

It’s possible that with working and homeschooling gone, my autism diagnosis set off a massive identity crisis, followed by the realization that my entire way of living had to change, followed by a toxic explosion of internalized disabilism. Whatever the reason, I feel no self-worth at all. I do a beautiful job repairing a quilt, and all I can see are the imperfections in my work. I knit my husband a sweater from the Icelandic wool he spun himself, and all I can see are all the mistakes I made. Everyone in creation is telling my husband what a wonderful sweater he’s wearing, and it has no impact on me at all. People tell me how much they like my writing, and it doesn’t penetrate the dense fog I’m living in.

It’s gotten me questioning how one builds self-worth in the first place. I mean, did I ever have self-worth, or did I just do a lot of things that convinced me I did? Having a job and being a homeschooling mother are both wonderful, but they were always going to end; therefore, I based my self-esteem on impermanent things. That seems like a dangerous move from where I sit right now.

I used to have a decent sense of myself because I always felt that I could fake it well enough to get by. I could make pleasant conversation; I could go to soccer games and act like I belonged; I could chat it up with the neighbors about anything and everything. But working hard to fake it no longer applies. I walk around with a headset and don’t speak or hear very much at all in the outside world. Pretending to be normal basically went up in smoke once I realized that I had to wear a device in public that most people use when mowing the lawn.

Worse yet, my conversations with my therapist seem to be having a negative impact on me. For instance, last week, I told him that I feel like I need to stop talking entirely when I’m out in the world. He kept saying that perhaps it wasn’t all that black and white, that I could be more moderate, check in with myself, and talk more when I wanted, and less when I didn’t. What he doesn’t understand is that for me, moderation and autism do not mix. Moderation can only apply when one has a fairly moderate experience of the world. When one’s experience of the world is extreme and intense, a moderate solution can be worse than none at all.

I’m not sure that my therapist realizes that the minute I open my mouth, I’m already in way over my head. I crave communication. I want to keep talking. So much. But I’m playing catchup with everyone. I’m always a few clicks behind the conversation, and I have to make a tremendous effort to follow what people are saying. When it comes time to speak, I have to call on resources I don’t often have. Plus, I am so used to working hard at speaking that I forget that I’m actually working hard at speaking. It’s always a strain, but the strain is so familiar that I don’t even notice something is wrong until it’s way too late and everything in my body hurts.

I know that my therapist is responding to my upset about my social isolation and trying to come up with solutions, but I don’t need solutions. Unless I happen to run into a dozen autistic people in my local community, my social isolation will remain. So perhaps a better strategy would be to talk about how to handle the seriousness of my disabilities and their consequences for my life. I will never be able to walk through the world as a hearing person. I will never be able to have a relaxed conversation out in public. I will never be able to pass for normal again. I would like some help dealing emotionally with the gravity of the situation, not all kinds of ideas about moderation that simply cannot work for me.

Some years ago, I ran across a book called Shambhala: The Sacred Path of the Warrior by Chogyam Trungpa. The author writes about the spiritual warrior in a way that describes the impulses and demands of my autistic experience. I was drawn to the following words even before I knew about my autism:

“[The spiritual warrior] has no room and no desire to manipulate situations. He is able to be, quite fearlessly, what he is.

[P]aradoxically, the warrior finds himself more alone. He is like an island sitting alone in the middle of a lake. Occasional ferry boats and commuters go back and forth between the shore and the island, but all that activity only expresses the further loneliness, or aloneness, of the island. Although the warrior’s life is dedicated to helping others, he realizes that he will never be able to completely share his experience with others. The fullness of his experience is his own, and he must live with his own truth. Yet he is more and more in love with the world. That combination of love affair and loneliness is what enables the warrior to constantly reach out to help others. By renouncing his private world, the warrior discovers a greater universe and a fuller and fuller broken heart. This is not something to feel bad about: it is a cause for rejoicing. It is entering the warrior’s world.”

I’m not sure I’m ready to rejoice.

© 2010 by Rachel Cohen-Rottenberg

I’m tired of the Asperger’s label.

I’m tired of people using it to distance themselves from other autistic people.

I’m tired of the folks who imply that having Asperger’s makes being autistic okay, but that being autistic is somehow not okay.

I’m tired of being put into some sort of nonsensical order in which Aspies rate higher than other autistics.

I’m tired of division.

I’m tired of hierarchy.

Bev’s latest post says it all for me. And by changing the name of her blog, she’s inspired me to do the same.

At some point, I hope to change my domain name as well. I haven’t figured out the mechanics of using a new domain name and making sure you all can find me there, but when I do, I’ll make the change.

UPDATE: If you’ve found the new URL, you’ll see that I’ve changed my domain name. I’ve specified the proper settings to redirect people automatically from aspergerjourneys.com, but it may take up to 72 hours for the settings to take effect. Argh. Meanwhile, I’ll need to go through and repost all my photos again, since they’re attached to my old domain name.

Note that I also have a new email address: rachel@journeyswithautism.com.

© 2010 by Rachel Cohen-Rottenberg

Jenn Power is a typically abled woman who lives with disabled people in an intentional community called L’Arche Cape Breton. She and her husband are the parents of twin boys with Down Syndrome. A week or so ago, I was reading her blog, Possibilities, when I came upon a post about some harsh words directed at her on the New York Times blog Motherlode. Apparently, this community leader and loving mother had committed the unpardonable sin of saying out loud that she would not want to cure her sons of Down Syndrome. I was especially struck by these words:

“I know that my position is a minority one. When you throw your lot in with marginalized people, you get marginalized. I understand that.”

Reading these words set off a wave of new realizations about my autism, my relationship with Bob, our ongoing struggles, and new possibilities for our lives.

Many of us autistic folk have talked and written about living on the margins, observing group dynamics, and deciding how to act. That feeling of living on the margins has always felt so precarious to me. I’ve always felt as though I were balancing on a fence post, living in perpetual fear of falling over backward.

So today, instead of thinking about “living on the margins,” I started thinking about “living in the margins.” The more I thought about it, the more I experienced a greater sense of spaciousness. All things being equal, I’d prefer to be able to come and go from the margins to the center and back again, but all things are not equal. In this society, I have a disability called autism, and I live in the margins of the culture all the time.

Because I’m also white, American, middle-class, and well-educated, the margins I live in are quite a bit wider and more elastic than the margins in which others live. In other words, I don’t for a minute believe that being autistic erases all other privilege, nor do I believe that my privilege can ever erase my marginalization. If anything, being autistic and otherwise privileged creates an odd kind of self-perpetuating expectation. I often think that, given my privilege, I should be “higher functioning.” I should be much more “normal.” I should feel a greater sense of “belonging.” I should be able to figure out how to live somewhere other than in the margins.

But of course, I can’t. That’s what being disabled is all about in the world as presently constituted.

Ever since Bob and I made our relationship known eight years ago, I have felt progressively marginalized. The first attempt to marginalize me took a very tangible form: one person on the synagogue board of directors suggested that Bob should leave me, and that I should leave the community entirely. The response of the other board members? Silence. While Bob did not leave me, we did leave the synagogue community, because when people saw us together, they spoke with Bob and ignored me completely. The same kinds of things happened in the larger community.

Virtually all of us on the spectrum have had that feeling of being hidden in plain sight, but until recently, I had never thought of it as an experience of marginalization. Instead, for years, after every outing, Bob and I would have long, tedious, upsetting discussions about how he got all the attention, about the ways in which people were ignoring me, about the fact that he didn’t step in and make it stop, and about how powerless and angry I felt. Because we couldn’t define what was going on in terms that made any sense, these discussions were exhausting and unproductive. We just kept having the same argument, over and over.

After I read Jenn’s piece, Bob and I had a long talk about marginalization, and suddenly, I realized why I had been so angry. I realized that Bob had never consciously given up his privilege of being “normal” and joined me in being marginalized. Not that I wish being marginalized on him or on anyone else, mind you, but do we really have another choice? After all, as Jenn said, “When you throw your lot in with marginalized people, you get marginalized.” Isn’t that what happens to parents of autistic children? To the family members of autistic adults? How many neuro-typical people want to befriend them, or listen to them talk about their loved ones? Not many.

Although Bob is quite wonderful, I’m tired of seeing him as the de facto prototype of “normal.” Some time ago, he said that it is hard to go out with me because I have to block sound, and he doesn’t like having to talk loudly in order for me to hear him. I’ve always felt uncomfortable with the impasse in which that leaves us, but I hadn’t been able to figure out how to get past it. Finally, in the midst of our discussion about marginalization, I blurted out words to the effect that if I’m going to feel human, he really needs to come into my world and stand next to me. Maybe, when we go out walking or to a restaurant, we don’t talk at all. Or maybe he talks loudly and feels a bit conspicuous. I don’t know. But uncovering my ears out in public really can’t be part of the plan, and I can’t stay home all the time, either.

For both our sakes, I don’t want Bob by my side 24/7, but our lives are becoming increasingly separate, and it bothers me. In the course of our conversation, he said that he’s willing to drop a lot of activities in the outside world, start from scratch here at home, put our relationship first, navigate the world together, and see what possibilities flow from there.

To get ourselves started, we did something simple: we went grocery shopping together. Part of our agreement was that “together” was the operative word. If I’m alone at the grocery store, it’s challenging, but I stay completely focused on getting my shopping done, and it works. However, when I’m with Bob, I’m more open, and if someone else comes in and starts talking to Bob, I feel very disoriented in an already challenging situation. So, if someone were to come over to talk, we agreed that Bob could say whatever he needed to say in order to keep his focus on me. In fact, I gave him permission to say just about anything about me he pleased: that I’m disabled, autistic, dazed, confused, weird, and undeniably odd. I don’t care. It just doesn’t matter to me anymore.

Fortunately, no one came up to Bob and wanted to talk, so we got our shopping done easily and had a very good time of it. Even lugging the groceries home was fun!

As we’ve gone through this process, Bob has realized that his ongoing resistance to standing in the margins with me derives from the fact that the only time he’s ever focused on being with a disabled partner, she was dying. Part of him hasn’t wanted to accept that I’m disabled because, when the thought arises, his mind goes to a very sad, scared place. But I’m not dying. On the contrary: I’m fighting like mad to feel part of the world, to feel that my life is meaningful, to feel less afraid and more powerful. I’m fighting to widen the margins in which I live, for myself and for other people.

I’ll let you know how it goes.

© 2010 by Rachel Cohen-Rottenberg

I’m feeling very depressed. I was very “up” after my trip to New York City, and I seem to be in a slide now. I’m very teary and feeling very isolated.

My daughter is in two plays at school, her very first ones, and I won’t be able to go. It will be crowded and noisy before and after, and I will get seriously overloaded just being there. So, I talked to her, and she seemed fine with it. I offered her support around the play, like helping her practice her lines. She suggested that I contact her principal and arrange to get a DVD of the performances, which I’ve done. But I feel really sad about what I can’t do.

Then, yesterday, my ASL tutor was supposed to come over, but she forgot. We had changed the day from Monday to Tuesday this week, because she had a teachers’ meeting on Monday. So, since the schedule had changed, she got involved in other things and our session slipped her mind. I know that it wasn’t personal. I know that. It’s just that in order to see her—in order to see anyone—I basically have to orient my entire day around pacing myself, not doing too much, conserving my energy, and getting ready to interact. When she didn’t show up at 4:30, I was like a little kid, looking out the window every 10 minutes, wondering where she was. It was like my whole day was wasted. She sent me a really apologetic note this morning, and I’m not angry at her. I’m just sad.

I’ve begun feeling that perhaps I need to find a part-time job, just to have a routine and a context outside of myself. I contacted a counselor at VocRehab Vermont, a Vermont state agency that helps put disabled people to work.  The counselor’s name is Will. He’s the Deaf counselor I emailed several months ago regarding strategies for navigating the hearing world. I’ve got an appointment to meet with him next Friday. Here’s the email I sent him this morning:

Hi Will,

Next Friday would be fine. Please send directions to your office. It would also help me if we could communicate in a quiet room. If there is too much background noise, I won’t be able to hear your interpreter’s voice or think clearly.

Here is a short list of my disabilities/challenges:

Asperger’s Syndrome (a form of autism)
Sensory Processing Disorder (of the sensory over-responsivity type, mainly affecting moving visuals and sound)
Mild dyspraxia with fine motor tasks, moderate dyspraxia with gross motor tasks (Dyspraxia is a difficulty in sequencing novel tasks.)
PTSD, anxiety, and depression (all managed by medication)

And here is a list of what I’m good at:

Focusing on the task at hand
Organizing just about anything
Discerning and creating patterns
Doing strenuous physical work
Writing and editing
Creating art
Being honest and direct

I’d like to find work in the non-profit, social-service sector. Most of my employment has been in front of computers in corporate environments, and I don’t want to work in front of a computer or go back to the business world again.

All the best,
Rachel

I don’t know what he’ll be able to help me do. I’m seesawing between my fear that he won’t think I’m really disabled, and my fear that he’ll think I’m too disabled to work at all.

I seriously need to get some support for being out in the world again. I don’t know what I’m suited to do anymore. My level of confidence is at an all-time low, and no matter how many times I tell myself that I’m a good, intelligent person, it doesn’t seem to matter. I just want to cry.

© 2010 by Rachel Cohen-Rottenberg

I went to New York City with Bob for three days last week, and I made a new friend. I know you already know one another (fairly well, in fact), but you’ve never been formally introduced. Kindly forgive the social faux pas, which I will now graciously remedy:

Blog readers, meet My Eccentricity. My Eccentricity, meet my blog readers. My Eccentricity has been around for awhile (as long as I can remember, in fact), but we’ve only recently become close friends. It’s amazing what a trip to New York City will do for you.

And how did I happen to end up in New York City for three days when I frequently quail at the prospect of going grocery shopping in our quaint little New England backwater? It was love. Of course! Read on.

The Incentive: I was tired of being away from Bob for three days every other week. He was tired of being away from me for three days every other week. Spending time with his dad is an imperative for Bob, so the idea of cutting back on these visits never occurred to either of us. The only way to get more time together was for me to get in the car and go to New York City.

The Drive to New York City: It had been about a year and a half since Bob and I had made the four-hour drive to New York together, and I had missed those times. It’s always been great to go for a long drive and have time to talk, joke, and just be together. So, although the drive was completely overstimulating to my poor Aspie nervous system, I made it to the hotel without getting a migraine. The fact that we took the Merritt Parkway, on which no trucks are allowed, went a long way toward keeping my stress at a reasonable level.

The Hotel: The room was nice, the employees were friendly, and best of all, I didn’t leave the place from the moment we checked in until the moment we checked out. Now, it may seem that going to Manhattan and staying indoors was a waste of time, but I assure you, it was not. The sensory minefield of the drive was sufficient for a first outing, thank you, so I decided to make the best of my time at the hotel. I finished incorporating all the review comments into my book, I caught up on my ASL homework, and I made great strides on a sweater I’m knitting for Bob. Plus, the hotel had an awesome fitness room, and I was the only person in it for over two hours. I actually found a way to have solitude in New York City! I should write a book.

And did I mention that Tuesday was our seventh wedding anniversary? It was! So, we ordered in dinner from room service, chose a movie to watch, and…that’s as much as I’m going to say.

The Impact of the World at Large: During the time that we were in New York, the people of Massachusetts made a terribly asinine an ill-advised decision and decided to honor the memory of Ted Kennedy by electing a man who ran on a platform of derailing healthcare reform in the Senate. And what was worse: Every time I went onto the Comcast website to retrieve my email, I had to see a headline about it. Arghh. So, although I knew that I couldn’t cure the insanity overturn the will of the people of Massachusetts, I could do a couple of things to make myself feel better: a) go on a news fast and b) install a desktop email client so that I never have to use Comcast webmail again EVER. I did both. More on how I dealt with the healthcare debacle later on.

The Drive Back to Vermont: After three days, we were very ready to go home. So, while Bob walked to the parking garage to get the car, I ensconced myself on a sofa in the hotel lobby—a sofa that was so big that when I sat all the way back, my feet dangled over the edge of the cushions. I felt like a little kid in a room full of grownups—kind of how I feel all the time, except that this time, I felt very cute. The lobby also got noisy, so it was a relief to get in the car and head back to our quiet lives in Vermont. We left in sunlight and arrived home just as it was getting dark.

My Healthcare Reform Rant: By the time we got home, I was a wee bit very much on the overstimulated side. I was talking a blue streak, bouncing off the walls, unpacking like it was the last thing I’d ever do, and feeling really, really happy and energetic for the first time in a long time. I hadn’t been depressed exactly, but protecting myself from the possibility of overload had left me feeling isolated, and the trip to New York had made me feel like part of the world again. I finally realized (duh) that I don’t have to conform to anything (duh) except the laws of wherever I happen to be (duh), and that I can indulge my eccentricity any old way I please (duh), especially (duh) in the comfort of my own home.

So, because I was royally pissed off by the whole disaster in Massachusetts, I decided to expend some of my rather impressive store of nervous energy by indulging in the following rant:

“What the HELL were people thinking? How can they NOT know how badly this country needs healthcare reform? Are they crazy? What the hell happened?

Oh, I know. They let children vote in Massachusetts. Children. Well, actually, people of legal age with the mental acuity and social consciousness of children.

But wait. That’s an insult to little kids. In fact, I can’t compare these people to anyone, because they’re being so mind-numbingly ridiculous that any comparison to any other group of people would be unfair. I mean, how do you describe people who think that if they get sick, their insurance company is going to cover the costs? And not raise their premiums? Hahahahahahahaha! What planet are these people on?

And how the HELL did Ted Kennedy’s Senate seat end up in the hands of a person whose only aim in life (apart from looking perpetually young) is to derail healthcare reform? I mean, do people have ANY respect for Ted Kennedy’s legacy, for the way he supported the working person, for the passion he felt about healthcare reform? HELLO? ANYONE? Holy shit. I hope they issue an alert for the area around Arlington National Cemetery, because right now, Ted Kennedy is SPINNING in his grave at such a high velocity that his burial place is sure to become the epicenter of a MASSIVE EARTHQUAKE. Maybe then, all those folks in Congress will WAKE UP to the need for universal health care.

But wait! They already have universal health care. Paid for by the US government! Oh. My. God. It’s socialized healthcare. For Republicans. Can the hypocrisy get any worse?

Yes, it can. The Democrats in Massachusetts can blame everyone and everything for their defeat, but last time I looked, Martha Coakley, the freakin’ attorney general of the state, never even ran a freakin’ campaign. What was she THINKING? That the ghost of Ted Kennedy was going to anoint her the Senator from Massachusetts?

Martha, honey. It doesn’t work like that. DUH!! How can you be the attorney general of the state and NOT KNOW THAT???”

I felt better.

The Day After: I went to work at the thrift store. I was friendly. I made conversation. I extended myself. I brought home a quilt to repair. I was still pretty buzzed.

The Day After That: Bob and I discussed how much fun I am when I’m feeling energetic and inspired. And why people with autism so often get diagnosed as bi-polar. And how I really am fine the way I am, however I’m feeling. And that I don’t need to ask the world’s permission to be myself.

And Now? No crash and burn. At all. Just some tiredness and a sense of relaxation. Amazing, eh?

That’s what happens when I go out into the world and stop worrying about what people think of me.

© 2010 by Rachel Cohen-Rottenberg

After reading the kind and strengthening responses to my last post, and discussing the matter thoroughly with my very wonderful husband, I made the wise decision to get off the family airplane. Although I detest heights, I summoned up the courage to pry open the emergency exit, jump into the air, pull the ripcord on my multicolored parachute, and drift slowly back to Earth.

I also sent the following email to my cousin Ralph, just to let her know that I had landed safely:

Hi Ralph,

I see that the family lie has reached your door. Mazel tov. Enjoy.

Rachel

The view from the plane was spectacular, but I am very glad to have my feet back on solid ground.

© 2009 by Rachel Cohen-Rottenberg

My fellow autistic wonder-folk, I wish to share with you the history of the family business–my family’s business. It’s a multi-generational, multi-regional business and yet, it’s also a well-kept, closely guarded secret of a business. I can’t begin to speculate on how it became such a wildly successful enterprise, given that most of you have never heard of it, but believe me, it’s been thriving for a long, long time. 

Legend has it that the company began in a shtetl somewhere in Poland, a shtetl where it was very cold, and the people kept warm by coming up with business plans and feeding the cookstoves with them. One of my illustrious ancestors, however, seems to have carved out a business plan in secret—a visionary plan—which he passed onto his firstborn son, who passed it onto his firstborn son, who passed it onto his firstborn son, and so on, and so on, ad nauseum, until this very old and very visionary business plan ended up in the duffle bag of a great-great-ancestor, who carried it with him in steerage when he set out for America.

To make a long story short, I grew up in the very heart of the family business. Although its true name was rarely spoken, I distinctly remember my mother making a joking reference to Take-A-Chance Airlines. Had the rest of the family not loudly shushed her at that moment, I would have forgotten the incident altogether, but shush her they did, and the secret was out: my parents owned a majority share in Take-A-Chance Airlines. Can you imagine the nausea excitement I felt? 

When I was small, of course, the company was barely out of start-up mode. It was limited to a few offices in a motel, a small apartment, and other decidedly unglamorous places. But as I grew, the company grew with me. By the time I was 11 years old, we had quite a fleet. I mean, the planes! Oh my God, you should have seen them! They were so shiny and so new, inside and out. There were purple plush carpets, purple upholstered chairs, valuable antiques, brand-new lava lamps, and a TV set for every passenger. It was unbelievable!

And you’ll never guess the best part. No. You won’t. I’m telling you. Are you ready?

They paid you to fly on the airplanes! Yes! They really did!  Sometimes, they paid you in cash that came in birthday cards; sometimes, they took you shopping for school clothes; and twice a year, they took you on an all-expenses-paid vacation to places like Florida, Bermuda, Nova Scotia, and Quebec. I don’t know how they managed to remain profitable by paying folks to fly with them, but the money kept coming in like nobody’s business. Of course, the CEO would complain at the dinner table that he was worried about finances, but from what I could see, everyone on those airplanes had all the comforts of home.

Well, most of them did. But not all. Oh, no. Not all. There were two small children, and they were not so very comfortable at all. They had beautiful seats on one of the biggest airplanes, but every now and then, someone would come over to the girl when she was sleepy and touch her in ways she didn’t like. And then sometimes, someone would come over to the boy or the girl and begin beating one of them for no apparent reason. And yet, miraculously, whenever a stranger came onto the airliner, the little girl would play the piano beautifully (yes, there was even a piano on the plane!) and the little boy would do his very best not to bring a hose through the window and flood the passenger area again.

Those were the days! Of course, there was a catch. It wasn’t called Take-A-Chance Airlines for nothing. While the fare was unbeatable, the planes seemed to tumble out of the sky on a regular basis. Sometimes, in the heady days of my youth, I would rush the cockpit, push all the buttons at once, lean into whatever would move, and get that baby back up into the air. But sometimes, I just didn’t know how to do it, and the plane would crash. I have the scars to to prove it. They’re not pretty, so I’m not including photographs. They’re mostly where you can’t see them anyway.

By the time I was in high school, I had started to wise up. I began carrying a parachute, a bedroll, a good pair of walking shoes, several days’ worth of water, and a map every time I got on a plane. I hid everything in my backpack, of course. I had to. You see, it was a well-known fact that on Take-A-Chance Airlines, the planes never crashed or even came close to crashing, which confused my little Aspie mind no end. However, I was smart enough to understand that if I carried a parachute in plane plain view, it might appear that the plane might crash, and then the whole family business would be ruined, all because of me. So I learned to mind my Ps and Qs, let me tell you.

By some miracle, I survived into adulthood. And then, one day, after one touch and one crash too many, I resigned my seat on the board of directors and left my interest in the business to my younger brother. From what I understand, he took over the business after our parents died, and he got their entire inheritance in the bargain.

But I’m getting ahead of myself. As I grew further and further away from the family business, I began to think more clearly about it. After paying people to listen to me rant and rave on a weekly basis for several years, I began to realize that the planes really had been crashing all those years, and that I wasn’t confused or crazy at all.

I want to say that the story ends there, and that I lived happily ever after, but I have two terrible weaknesses: 1) I am a very visual Aspie, and 2) I believe that somehow, somewhere, in one of the company’s regional offices, in a galaxy far, far away, there is a plane that will not crash. And so, after a long time away from the business, I began emailing distant family members on my mother’s side and asking them for old family photographs. Sometimes, I would get wonderful photographs, which I would gaze upon for hours on end. The words that came with the photographs were friendly enough, but I didn’t forge any new or close family relationships with their senders, so I began asking for photographs closer to home. With some desperation, I went to one of my uncles—just one of the innumerable family members who had never called to ask why I’d up and left the family business in the first place. I knew that contacting him was a foolish thing to do (kind of), but I really, really wanted those photographs.

And family. I wanted family. And a plane that wouldn’t crash. And I thought I’d found it when I first emailed my uncle. But I was wrong. As we emailed back and forth, the plane pitched and rolled worse than ever before. And while it was pitching and rolling, I found out that my parents had convened a family conclave in New Jersey, in which it was agreed that if one of their offspring, whose name begins with an “R,” were to contact any other family member for any reason, they were to put her on a plane that would begin its plunge the minute she began to relax and get comfortable.

And that’s exactly what happened.

As you can well imagine, the next several months of my life consisted of paying more nice people to listen to a spirited recitation of all the email exchanges that had taken place as the latest plane was diving into the ground. After awhile, I began to get hoarse, so I stopped talking and began to feel better. And when I began to feel better, I swore off doing stupid things like calling Take-A-Chance Airlines and using my real name to ask for a seat on a plane that wouldn’t crash.

For a while.

However, recently (I know, I know, you don’t all have to groan at once, do you?), I decided to toddle over to my father’s side of the business and see whether there might just be someone who had a little genealogical information and a whole bunch of a few really cool old family photographs of some kind or another. So I looked up people with my father’s surname on Facebook. You know, Facebook. Where you find your friends? And do social networking? What could possibly go wrong? I mean, there’s no sign that says, “Abandon hope, all ye Aspies who enter looking for unknown family members.” If there were a sign like that, I wouldn’t go near the place.

Anyway, as usual, my contact with my new family member started off nicely. I got settled into my chair. The handsome steward asked me whether I needed an additional Ativan to take the edge off my anxiety. I thanked him and said I’d take two. He gave me a glass of crystal clear spring water to wash them down. Everyone was cordial. I was cordial. I was. I was so fucking cordial,  I swear to God, every one of you would have mistaken me for an NT. Really. You want proof? Okay. Here’s proof:

My cousin Ralph (not her real name) sent me a packet of photos that arrived last Tuesday, December 22. Here is the email I wrote in response:

Hi Ralph,

I received the photos today. Thank you so much for sending them! I have been sitting in front of our woodstove, gazing at them. I especially love the ones with **personal family information excised for brevity…**

Again, thank you for sending the pictures. I’m really quite crazy about family photos of any kind, and have a whole wall of photos from my mother’s side of the family, going from my grandparents’ generation and back into the late 19th century.  I’m so glad to begin collecting photos from my father’s side as well.

All the best,
Cousin Rachel

Here is what Ralph wrote back by email the same day:

 Hi Rachel,

I am pleased that you are enjoying the pictures I sent.  I have many more and am experimenting with our new computer.  I think we have figured it out and am attaching some additional pics.  Please let me know if you get them and I will send others.

* Information about attached photos deleted for brevity *

When I hear from you, I will forward some more.  Hope you enjoy them.

Have a good evening.
Cousin Ralph

Here is what I wrote back by email the same day:

Ralph, these are gorgeous! I love them. THANK YOU!

Cousin Rachel

Did you notice the part where Ralph says she will forward more pictures when she hears from me? Five days later, I had not received a single picture. So, I remained my cordial, restrained, friendly self and wrote her the following email:

Hi Ralph,

I don’t know whether you got my previous message. I just want to make sure you know that the photos came through just fine, and that I really appreciate them.

All the best,
Rachel

Here is the response I received an hour later:

Enjoy

That’s it. One word. No salutation. No proper names. No punctuation. Nothing.  So, I figured I’d take one more careful crack at it (I know, I know, it’s getting pathetic already):

Thanks! I am.

The last time you wrote, you mentioned that you’d send more pictures once you learned that I’d received the ones you sent. Just checking in to make sure that all is well.

All the best,
Rachel

Now, I will freely admit that I am working with a couple of subtexts here. When I ask whether all is well, what I really mean is the following:

I hope no one has fallen gravely ill. I really do. However, in my heart of hearts, I know it’s more likely that you’ve been talking to my brother, or to my uncle (who just happens to live in the same town that you do), and that one of them has told you, in no uncertain terms, that I’m the most vile creature ever to walk the earth. And why do they say this? Because I got sick of being hurt by the two (count them, two) people in the family who were responsible for the unwanted touching and undeserved beatings of my childhood, and so I left them behind, and I saved my own life. And I’m sure that whoever you’re talking to has repeated the lie that those two people told everyone. What lie? That I’d written them a letter and told them that if they ever contacted me again, I’d call the police and accuse them of abuse—something that I never, ever threatened to do.

Why does no one believe me?

Oh, yeah, that’s right. The family business is called Take-A-Chance Airlines, my name starts with an “R,” and I always get the plane that crashes—except that the propaganda advertising for the business claims that none of your planes has ever crashed. So you’d better ignore me, because you might just have to acknowledge what really happened, and that would be outside your comfort zone.

Of course, I’m not going to elucidate the subtext to Ralph. At least, not right away.

Somehow, I don’t think I’m the one with the problem here. Except, of course, that I keep hoping to find someone who can stand outside the family business for more than a day or two. Someone simple, who uses words that mean something, and follows through on them. Someone like me.

My mistake.

© 2009 by Rachel Cohen-Rottenberg

Before I launch into the saga of how I made it through the past month in one piece, I wish to point out the following: I refer to the period between the last Thursday in November and the 25th day of December as the Christmas season. I refuse to call it the holiday season.

Why? Because I’m a foolish Aspie who believes in calling things by their proper names. I look around me at this time of year, and I see pretty lights and decorated trees. If I walk into a public place, turn on my radio, or watch TV, I hear Christmas carols. If I speak to another living soul, chances are that said living soul is either very, very excited or very, very stressed out about buying presents to put under the tree. What do any of these things have to do with Chanuka? Or Kwanzaa? Or the Buddha’s birthday? Or any other holiday on the face of the planet except Christmas? Nothing. Absolutely nothing.

Of course, many people celebrate Christmas as a secular holiday, concentrating on it as a solstice celebration. And certainly, as the Festival of Lights, Chanuka must have had its origins in the primal human need to shine a light in darkness. But my practicing Jewish mind cannot forget that Christmas isn’t simply a solstice celebration. For most people in the world, it’s a religious holiday, and while I can turn just about any piece of religious text into a metaphor, it’s very hard for me to be confronted by a life-size manger scene and symbolize it away. I experience the world so visually that these kinds of things have a visceral impact that I just can’t shake.

So, I like to call the season what it is. It’s Christmas time. For people who love Christmas, who have wonderful times with family, and who are not easily overwhelmed by crowds or by the excited, frenzied energy of other people, it’s a happy time. I respect that. I accept that others have customs and beliefs of their own, and I do my best not to complain during the Christmas season—at least, not outside my own house. Now that Christmas has passed, however, I want share how I deal with a time of year that I typically dread.

For most of my life, I’ve always identified my dread as that of a Jewish woman surrounded by the trappings of an entirely alien culture. It’s not as though I see my Jewishness reflected in the larger culture in July or anything, but at Christmas time, I cannot go anywhere and find respite from the goings on. To put it bluntly: Christmas is in my face wherever I go. There is no escaping it. I’ve even tried going on Jewish spiritual retreats in December, only to have people sing Hebrew prayers to the tune of Rudolf the Red-Nosed Reindeer. You haven’t lived till you’ve seen a guy in a tallis singing Adon Olam to the tune of a Christmas carol.

Now that I realize that I’m autistic, I’ve become aware that I’m not just feeling the alienation that springs from being a member of a religious and cultural minority. In the best of times, being autistic means that I feel as though I live in a foreign country and will never fully learn the language. At Christmas time, that feeling intensifies by several orders of magnitude. I don’t understand what all the excitement is about, and I can’t even begin to parse the social rules. When someone wishes me a “Merry Christmas,” what am I supposed to say? I almost reflexively say, “Same to you,” but inside, I’m thinking, “I don’t celebrate Christmas. Why do you think I do? Now I’ve just gone and pretended that I do, which is a lie.” I get caught between the social niceties and the truth. It happens the rest of the year, too, but at Christmas it happens just about all the time. 

Unfortunately, the more generic “Happy Holidays” greeting does not remedy the situation. I know that people are trying to be ecumenical and embracing, but it doesn’t work. At least, it doesn’t work for me, especially during those years when Chanuka begins in early- to mid-December and is already over before I get wished a happy one. At those moments, I have to choose between saying, “Same to you” and “My holiday is already over.” Because I am a nice person, I usually just say, “Same to you,” but I’m basically lying. Again. I’m suggesting that I’m still happily celebrating Chanuka when all the latkes have already been eaten and all the menorahs have already been put away.

This year, I began to realize that being autistic gives me a bonafide, neurological reason for staying away from all the goings on associated with Christmas. At any other time of the year, I am very careful about where I go. In order to avoid sensory and empathic overload, I stay away from loud places. I stay away from crowds. I wear earplugs and a noise-blocking headset just to go grocery shopping. So going out during the Christmas season is absolutely out of the question. All the frenzied, stressed, excited energy out there would hit me like a tsunami, and I’d come home exhausted, disoriented, and sick. Why do that to myself? There is no good reason.

So, starting on Thanksgiving, I went on retreat—in my own house. Of course, I planned ahead. I made sure that I had sufficient food from my four major food groups: protein, winter vegetables, spelt flatbread, and dark chocolate. I cancelled my volunteer work, my ASL tutoring, my trips to the co-op, and every other outside activity except my therapy appointments. In fact, when I told my therapist how I was spending my time, he said, “What a great idea! If more of my clients said ‘If I haven’t bought it by Thanksgiving, it’s not getting bought,’ I would see a significant improvement in their moods and levels of functioning.” I felt supported.

Other than my weekly trips to the therapist, I stayed home and did all kinds of fun things. I did some quilting. I exercised on my stationary bike. I got all the materials ready for knitting Bob a sweater. I joined Facebook and found an astonishing number of childhood friends. I did some very satisfying genealogical research on Ancestry.com. I had some very nice contact with a cousin who sent me some wonderful old family pictures. I watched an episode of “Buffy the Vampire Slayer” with Ashlynne and several episodes of “The Wire” with Bob. I supported Bob’s week-long trip to California, and I enjoyed the solitude. A lot. Surprise!

Of course, I also celebrated Chanuka and Ashlynne’s 17th birthday. This year, Ashlynne got the use of my car, and I got the best present ever: two of my Facebook friends, who are not Jewish, wished me a happy Chanuka while it was still Chanuka! Do I have good judgment when it comes to friends, or what?

I had a good time. And I’m in a good mood. And after January 1st, I’m going to resume my regular activities.

I like this way of passing the Christmas season. I’m going to make it a tradition.

© 2009 by Rachel Cohen-Rottenberg

Virtually all of us have had the experience of letting our hopes blind us to what is actually going on. There are a few spiritually attuned people in this world who, more often than not, respond to exactly what is happening in the moment, but alas, I am not one of them. Like most people, I get derailed by what I want, by what I need, and by what I fear. And, like most people, I suffer the emotional consequences of the clash between my projections of what will happen and the reality on the ground.

As an autistic person, though, I find that the physical impact of letting my expectations get in the way of my better judgment is often profound. Since Thursday, I have been dealing with the physical impact of meeting with my nonverbal autistic counterpart (whom I’ll call Jenny) and the very kind neuro-typical man with whom she shares a home (whom I’ll call Joe). While there were many good things about our visit, I’ve allowed the good things to get in the way of noticing the impact of the difficulties. Since our visit, I’ve had intense and troubling dreams. I’ve woken up every morning with my heart racing. I’ve been on the edge of a migraine almost constantly. Today, I am finally figuring out that something went wrong, but only because my body has been screaming at me for three days to listen up.

So, I’m listening. What I’m learning is that my very tenacious mind ignored a long series of “uh oh” moments that might have helped me care for myself in essential ways.

Here’s how it started: The week before last, when we were planning the visit, Joe and I had some wonderful email conversations. He is a very good person who is trying his best to understand what Jenny needs, and his emails reflected that. However, there were signs that his hopes for the visit were beginning to get the better of him. I could see his very great need for respite and his very great desire for Jenny to find a friend. A little tiny voice inside me said “uh oh,” but I ignored that tiny little voice.

I know exactly why I did it, too: Joe’s need for the situation to work exactly mirrored my own. I very much wanted to make another friend, and I very much wanted to stretch my consciousness of what friendship means altogether. So, over the course of a week, Joe and I built a picture of what we hoped would happen, despite the fact that I had never met Jenny and she had never met me.

In his emails, Joe had described Jenny as being very easy-going and able to go almost anywhere without a lot of difficulty. On the day of the visit, however, Jenny was quite agitated. I could see it the moment they got out of the car. Joe said that she rarely becomes agitated, and that he wasn’t sure why it was happening. I thought perhaps it was just anxiety at being in an unfamiliar environment, but he said that she’d woken up jittery that morning. That little voice in my head said “uh oh” again, but I told it to be quiet and to stop bothering me.

As a result, I quickly overrode my own agitation and tried to be a welcoming host. I invited Joe and Jenny into the house, where Jenny began to move furniture and grab food out of the refrigerator. I was so intent on being welcoming that I discounted how unsafe I was beginning to feel. Jenny isn’t much taller than I am, but she is one strong woman with a very strong will. It was quite difficult to get her to move away from breakable pieces of my daughter’s artwork. The little tiny voice in my head peeped “uh oh” again, but to no avail. I wasn’t listening.

After a short time, we decided to go out for a walk. Jenny and I walked hand in hand, while Joe followed behind. I understood why Joe was there: he wanted to be sure that Jenny felt safe and that I could keep her safe. I kept telling myself that it was fine, but there was that threesome thing happening, and y’all know what happens to me in crowds of three. Uh oh. I was enjoying Jenny and our walk, but I was also getting overloaded.

When we got back, Joe seemed disappointed in the visit. I got the feeling that he’d been hoping that I’d seem more like Jenny, and that I’d be a kind of bridge between them. So, yes, wanting desperately for things to work, I began to articulate the ways in which Jenny and I were alike. At the same time, I was keenly aware of the fact that Joe viewed me as far more neuro-typical than autistic. And yes, that poor little muted voice whispered “Uh oh, and maybe you should keep your mouth shut now?” but there was no point in ruining a perfectly spotless record of ignoring every last signal to take care of myself. So, I tried to explain that I’m autistic and not neuro-typical, which meant that I was talking far too much, for no good reason, and exhausting myself in the process.

Will I ever learn that explaining myself does not work? (I’m aware that the question is beginning to sound rhetorical, and it concerns me.)

In any case, it’s pretty clear to me now why Jenny felt so agitated. Over the course of a week, the expectations that Joe and I were co-creating had become apparent and Jenny had picked up on them. Great expectations of an unknown situation would make anyone agitated, especially an autistic person who is acutely aware of what is going on around her. The fact that she couldn’t verbalize her discomfort doesn’t mean that she didn’t understand what was happening. I’m sure she did. I’m completely agitated by the whole thing three days later, so her agitation should not have come as a surprise to me at all.

Time to let go. This relationship will not work, despite everyone’s best intentions. That little voice whispering “uh oh” has become rather loud, I’m afraid. It’s now shouting things like “Am I not getting through to you?” and “If you keep on with this, you’ll get a full-blown migraine.”

After three days, I can finally say to myself, “Look, it didn’t work for you, and it didn’t work for Jenny. That’s really okay. Other good things are happening, so just keep moving forward.” My head still hurts a bit, but my heart rate is beginning to return to normal.

© 2009 by Rachel Cohen-Rottenberg