Journeys with Autism

When I gave birth to my daughter, I was 34 years old. I remember quite clearly watching the nurses weigh and measure her. I remember how loudly she was yelling when they bathed and swaddled her. I remember how calm and quiet she became when they put her into my arms for the first time, because she could once again hear the familiar sound of my heart.

And I remember thinking, “She’s brand new. We’re at the beginning. When she’s 18 and ready to leave home, I’ll be 52. I’ll be so old! That’s forever away.”

And this year, I’m 52, and my daughter is talking about going to California after she graduates high school.

Please be assured that this post is not another meditation on how fast the time goes, or how brief it all is, or how hard it is to let go, even though all of those things are true.

This post is about reaching a crossroads, about making a commitment, about finding the strength to face what comes. It’s about doing all the same things I did on that day that my daughter was born, except that now I do them in celebration of my own birth and my own life.

It used to be that I hated thinking about my birth. It reminded me of my parents. It wove me back into the fabric of who they were, because I had to remember who gave me my body, my eyes, my face, my DNA, my life.

But now, suddenly, I want to celebrate by giving myself the only gift worth having: the gift of myself.

Yeah, I know that sounds hokey, but I am not in a hokey mood. Far from it. I’m not talking about a kind of New Age “love and embrace the special soul that you are” moment. I’m not talking about a kind of religious “I, too, am a child of God” moment. And I’m definitely not talking about a psychotherapeutic “I am lovable and worthy of love” moment.

No, I’m talking about something much more fierce and powerful than that. I am making a commitment to take myself back. Here is my declaration of intention, toward which I will strive with all of my ability:

I will no longer do anything that hurts my body, whether other people understand or not. If speaking hurts, I will not speak. If hearing hurts, I will not hear. If being touched is beyond my ability to tolerate, I will not be touched.

I will not attempt to shoehorn myself into some model of non-autistic consistency, in which if I can speak sometimes, I must speak always, and if I can hear sometimes, I must listen always, and if I can be touched sometimes, I must accept touch always. Those days are done.

Sometimes, I will speak and I will listen with my ears, only because sometimes, in specific situations, with specific people, at specific moments, when I’m calm and rested, and a million other factors that I can’t define come into play, everything comes together and it doesn’t hurt. I can’t always predict those moments, but I will recognize them when they arrive, I will choose to engage them with integrity, and I will not be pressured into doing otherwise, by anyone.

I will protect my health by communicating with others in a way that works for me, even if it takes time and other people would like me to go faster. When doing business out in the world—at the grocery store, at the bank, at a tag sale, anywhere—I will use my iPod Touch and any other appropriate assistive technology at my disposal.

I will no longer be a victim, living in fear, apologizing for who I am, and meekly asking other people to accept me.

I will live with all the fierceness and fighting spirit I’ve had from the day of my birth, and I will not turn them over to anyone.

I will insist upon my right to be treated as a complete human being, in all times and in all places, and I will not back down.

© 2010 by Rachel Cohen-Rottenberg

This subject has been on my mind for awhile.

I have always felt much younger than everyone else, even when I was a child amongst other children my own age. And now that I am chronologically a middle-aged adult, I still feel like a kid, as though I haven’t really grown up.

I first remember feeling very young at summer camp. At eleven, I was one of the oldest kids there, and yet, I didn’t feel as grown up as I perceived others to be. To this day, I remember each person in my age group very vividly. I especially remember two girls, Dawn and Monique, who seemed to be adults already. I knew that they weren’t. My mind kept telling me that they were just eleven, and yet they seemed to be much older than I would ever be. It wasn’t just that they were taller. It wasn’t just that they were pubescent. It wasn’t just that I was a tomboy and they were much more girl-identified. It was simply as though they were in a dimension that I couldn’t enter—and that I would never enter.

And it’s true. I’ve never really entered that dimension. That’s not a bad thing, by any means. It’s just a fact.

At summer camp, I don’t remember anyone being unkind or unfriendly to me. No one bullied me there, ever. In fact, I have a picture of my group, and I am smiling quite happily. It’s clear that I felt very safe and strong there. I remember that summer with a lot of fondness, because I had tons of fun. Feeling like the baby of the group was not a liability. It was simply something I experienced, along with swimming, archery, dressing up for costume parades, and singing in the daily all-camp talent show. I was still a kid, so not keeping up with the other kids didn’t particularly concern me yet. I noticed it, and I wondered about it, but that was all. I was still content in my own little world.

Then there was high school, and the feeling of neutrality wore off. As an adolescent, I got the feeling that I was growing younger while other people were growing older, and it upset me. To this day, I’m not sure how to define this feeling. I wouldn’t say I was perpetually immature. In many ways, I was more mature and more serious than my peers. I was dealing with a world of pain at home, I was surviving it with great resourcefulness, and I was continuing to function relatively well. If there is a word to describe how I felt inside, I think the closest word would be childlike. I was always childlike, always gullible, always without guile, and never able to really understand the kinds of games that people seemed to find necessary. I watched it all as though it were a movie and there were no part written for me to play. After awhile, I got tired of just observing. I started taking on the personae of other people and tried to play along as well as I could. But it wasn’t like having a part of my own. In fact, it wasn’t much fun at all.

I’ve grown up a lot since then. I’m a wife, a mom, a professional writer. And I’m less gullible now. I’ve lived and learned many thousands of times over. Of course, I still tend to believe the words that people say (because, after all, why in God’s name wouldn’t they say what they mean), but I am learning to wait for follow-through and not get all excited just because people say the right words. Well, okay, I do get all excited when people say the right words, but I’ve come to realize that words are not enough. I watched too many people throw them away like used-up Styrofoam cups. It’s a sacrilege, if you ask me.

But despite all this growth, all my realizations, all my experiences, I still see the world through the eyes of a child.

It’s who I am, and when I’m not feeling apologetic about it, I like it. A lot.

This childlike quality may account for why I miss the past so desperately. There is a part of me that has never really left childhood, or young adulthood, or any part of my past. It’s as though everyone I’ve ever known, all my life—my parents, my brother, my extended family, my ex-husband and his family–are all still right where I left them the last time I saw them. I know they aren’t. I know that time moves on and that people move with it. But there is a part of me that still looks at photographs of my childhood home and thinks that if I could just open that screen door at the top of the front steps, my brother will be right there ready to play, and my mother will be having coffee, and my father will be watching television downstairs. I really believe that it’s all still there, and that I’m still there. And then, I’m shocked when I find myself unable to get back there.

The mystics say that from the point of view of the Eternal, there is no past, present, and future, and that everything coexists simultaneously. To human beings, living in time and space, everything seems to pass in a linear fashion, and yet, I can’t help but feel that it really doesn’t. Perhaps this is a spiritual gift that autism has given me. I have to stand apart from a world in which people mature in a linear fashion because I’ve matured in a completely different fashion. And by standing apart, I’m able to see through the eyes of a child newly arrived on the earth—a child who knows that she has always existed even as she knows that there was a time before she was ever born.

© 2010 by Rachel Cohen-Rottenberg

Over the past few days, I’ve become more and more convinced that I am not depressed. If my doctor wants to put “Major Depression” in my chart and offer me more yummy pharmaceutical candy, he is more than welcome to do so. But I am aware that the problem is quite a bit wider and deeper than mere depression, if such a thing even exists at all. The problem is that I carry more grief inside me than a body can bear.

I’ve talked about hitting walls of grief before, but this time, it’s different. It’s as though all the losses that have ever happened in my life are standing out in vivid detail, and all the support systems that I don’t have are showing up as large, gaping, terrifying absences. Let me walk you through the landscape, if you care to travel.

The loss of my entire original extended family. The loss falls into several categories:

a) People who loved me dearly and are now dead: my maternal grandmother and grandfather, and my paternal aunt. Of course, it goes without saying that they were the first to go.
b) People who abused me, hated me, and slandered me and are now dead: my mother and father.
c) People who were nuts and are now dead: too many to name.
d) People who are still alive, loathe me, and treat me as though I’m dead: my brother, my remaining aunts and uncles, all my first cousins, and a host of second cousins.
e) People who are simply uninterested in knowing me: everyone else I’ve looked up that bears any blood relation to me.

There is something deeply, primally terrifying about having no family. It’s unnatural. I feel like a nameless, defenseless wanderer on the earth. What can I have done to deserve this? Why is this my fate? What am I do with this? What lessons am to learn? How I am to channel it? How am I to bear it? How am I to grow old and frail and defenseless with no family? I have no idea anymore. When I have the energy, all I can feel is very pissed off, but most of the time, I don’t have the energy.

Having a mid-life crisis that consists of discovering that I’m autistic. I was prepared for a mid-life crisis: the kid grows up and leaves home, and I have to figure out something else to do than wash her clothes and ask her about her day; the husband grows older and I have to worry which of us will go first; I start to realize that I don’t have a lot of time left and I’d better start doing the things I love before it’s too late; and I have to get right with the fact that I’ll never get to do a lot of things I would have liked to do because of paths I’ve already chosen. I was ready for all that. Truly.

But now I’ve got this autism thing on top of it. Oh my God. Are you kidding me? So now, in addition to never having ten children (menopause), or running a marathon (my knees are shot), or getting back all that time I wasted in graduate school (I can’t make time run backwards, no matter how hard I try), I also have to give up the idea of going back to school to study a second language (too many people in a classroom and whoops, you actually have to talk with them!), becoming a social worker (something about reading nonverbal signals—who knew?), travelling (too many people, too many changes, too much noise, too much everything), going to the local bookstore and making interesting conversation with the locals (the clunky headset, you know), having a social group in 3-D real time (a ten-minute conversation makes me feel like I’m getting the flu)…you get the idea.

The absence of a best friend. This one is laying me low right now. I really, really miss having a best friend. It’s been so, so long. At least 20 years.

The loss of my synagogue community. I thought I was over this one. It happened eight years ago that the synagogue decided that Bob had to either leave me or leave his job as the spiritual leader. When he left his job, everyone blamed me. It was horrendous. The whole place came down on me at the moment of my greatest vulnerability: I was coming out of a failed marriage. I had left my home, my community, and my familiar surroundings to move to the area of the synagogue because I thought I had a community there. I was supporting two households. I had more stress on me than I’d ever had before. And I was in love. And the community’s response was to kick me when I was down. Repeatedly. I realized this week that this experience was the end of innocence for me. I’ve never recovered from it. I’d held onto my innocence for so long, through so much abuse and betrayal, but the cruelty of a group of people trying to destroy the deepest love of my life finally broke it, once and for all.

How proud they must be.

Plans that keep failing. This one is throwing me for a loop. Time was that I could make a plan and implement it. I wanted a job? I’d write up my resume, apply for jobs, and get one. If I didn’t like the job I had, I’d get another one. When I wanted to go to grad school, I studied for the GREs, wrote the application essays, got fellowship offers, and decided where to go. When I wanted to homeschool, I homeschooled, and it was fun, and it worked.

But now? I have all kinds of plans, and they keep falling through. Remember that I was learning ASL so that I could volunteer at the school for the Deaf? Well, after many months of waiting for my paperwork to go through, the woman I’d been corresponding with told me, without warning, that she was taking another job. I haven’t heard from anyone since. Okey dokey.

Then my book designer, who used to be a friend, bailed on me without warning. We’d only talked for a year about her designing my book, but whoops! she was just so very, very busy with other very, very important clients, but she was so very, very sure I’d find just the very, very right person to design my book. I wrote her back and congratulated her on selling our friendship to the very, very highest bidder. (NB: I ended up designing the book myself, and it looks awesome, so that part was cool, but still, it would be nice to be able to depend on people semi-occasionally.)

And now I’ve found that I simply cannot work outside in the world on a schedule. I really wanted to work at the thrift shop on Tuesdays and Thursdays, but I just can’t. My body just isn’t made for it. So that great idea didn’t work out so great after all. I can do the work at home, but the point was to be out in the world, not living in an ever-contracting universe. The autism is such an unpredictable creature that I feel like I can’t make a plan I can depend upon. And people out in the world are such unpredictable creatures that I hear the words they say, and part of me thinks, “Great!” and the other part of me thinks, “Wait and see.”

“Wait and see.” There’s a philosophy of life. I can feel myself becoming one with my easy chair.

Lack of support services. How does one describe an absence? I mean, the medical profession isn’t even remotely in the vicinity of understanding adult autism, especially in adults with heretofore successful NT-looking track records. Where are my peers in the community? Where are the services for other developmentally disabled adults? What happens if I am widowed and alone? How do I meet other people? How do I get help for things I can’t do? How do I find someone to share my house so I don’t go nuts from being alone? How do I get someone to advocate for me when I’m old and frail and at the mercy of the medical profession? Or do I just become another nameless, faceless, useless old person? Am I just another number?

These are all the things that are looming up like the heads of the hydra right now. If I try to dispense with one, two more grow in its place. It’s maddening and frightening to be middle-aged, disabled, with no family, and to live in a society that doesn’t take care of neuro-typical, middle-class people when they get sick, never mind disabled people.

I look out my window these days, and I see the tiny green leaves that mean that winter is finally past. I used to love this time of year. I used to get up every morning and rush out to my garden, just to see the shoots coming out of the ground. It was my favorite time of year. But this year, all this new life is just making me cry. I feel as though I’m looking at a world that isn’t mine anymore. I can’t find a word of advice or philosophy or conventional truth that makes any sense to me at all. This new life will come, and it will bloom, and it will go, over and over and over. I used to wish that the bloomtime would last forever, but I don’t anymore, because I know how quickly it passes. Right now, I wish for the quiet stillness of winter, the warmth of the wood fire, the sense that nothing will ever change, and that I have no need to be afraid.

© 2010 by Rachel Cohen-Rottenberg

This post has been rolling around in my head for awhile, but I didn’t know how to frame it or even how to express the feelings I’ve been having. But lately, I’ve been crying a lot (care of numerous episodes of Buffy, the Vampire Slayer—thank you, Ashlynne!) and crying often brings me to a more basic level of where I need to be and what I need to see.

What this post is not about: This post is not about suicide, thoughts of suicide, plans of suicide, whether suicide is okay, or anything having to do with suicide. I am very superstitious on this subject. I have a great fear that were I to take myself out in a moment of despair, as I though I were the only human being who had ever suffered on the face of the earth, I might live all eternity in the same state of suffering in which I left. I don’t want that. I won’t have that.

This post is also not primarily about basic physical survival, although that’s part of it. I can generally scrape together food and get it into my mouth on a regular basis, and I’m not at any risk of homelessness. While there is always risk in life, I live in as safe a place as you’ll find in America, so I’ve substantially lowered my chances of an early departure.

What I mean when I talk about survival is the exhausting struggle of going through the day. I don’t mean that I wake up depressed every morning. I’m not even sure that there is such a thing as depression any more—at least, not in the way it’s understood by the medical profession. The problem is not a mood disorder. (In fact, I’m coming to hate the word disorder. It sets my teeth on edge.) The problem is the difficulty of bearing up physically, mentally, and emotionally against the onslaught of living in a society in which we are taught that happiness comes in a package or a pill, that we should live in a state of perpetual fear that someone else will get what we want before we get there, that the shelves will be bare, that we will have missed out on whatever-it-is that everyone else has, and that being autistic, we don’t have the currency anyway, so the joke’s on us.

The difficulty of survival is also a problem of finding meaning. There are days that I literally can’t figure out why I should get up in the morning. After awhile, I get hungry, or decide that I really should do last night’s dishes, or brush my teeth, or get dressed. The basics help. Some mornings, of course, I can’t wait to get up. I’ve got a million ideas for projects rolling around in my head. But inevitably, every day, I hit a wall of some kind, usually a sensory wall, and I’m always surprised. I’m almost 52, and I’m still surprised, because that’s not the way I’d imagined it was supposed to be. The surprise itself is enough to stop me in my tracks for hours or days. And the pain of hitting the wall is so discouraging that it seems to take me longer and longer to get up again and keep going.

As I’ve been sitting here at home, wondering about whether to work, or to apply for disability, or both, I’ve started getting lost in circles in my mind. After awhile, I felt as though my feet had left the ground, and I started weeping several times a day, seemingly for no reason. That’s when I realized that my challenge is much more basic than a work schedule. It’s about how to survive this world that overwhelms my senses, my conscience, my sense of justice, my heart, my mind, and increasingly, my sense of purpose. I used to have no problem finding meaning in my life—raising my daughter, loving my husband, feeding the poor, clothing the naked. There is no end to the brokenness of the world, and no end to the project of mending it. But somehow, I find myself less and less able to convince myself that I’m having an impact. Or maybe, better said, I’m having more and more trouble finding the humility to accept the tiny impact that I have. There is a Talmudic dictum that says, “You are not obligated to finish the work, but neither are you allowed to desist from it altogether.” It’s supposed to be both a comfort and an encouragement: You can’t do it all, but don’t quit. At least, that’s how I used to hear it. Now, I hear it as, “You can’t do more than add one tear to all the tears that need to be cried before the world can be mended.” And that just about flattens me.

I was thinking last night about the work I do for the thrift store. I’m mending quilts and other things that will be sold to benefit our local independent hospice. All of the services of the hospice are free, and it receives 65% of its funding from sales at the store. So, last night, I realized that I am helping make it possible for people to die in their homes, surrounded by familiar things and the people they love. It makes me feel good. It’s important that people die loved and cared for. But somehow, that sense of purpose that used to drive me—it just isn’t here anymore. I love doing the work, and I’m not going to stop, but I’m doing the work for a different reason than I used to—I’m doing it because I like working with fabric, color, and texture. The fact that it’s in the context of a non-profit is critical as well; I wouldn’t do this work for a retail store. But it’s not driving me like it once did. And that scares me some, because I used to have Big Plans and Important Purposes that were like fuel in my tank.

I seem to be having an energy crisis. Maybe the old fuel wasn’t sustainable. Maybe I need a cleaner, greener, more efficient fuel. I don’t know what it is, and as I get older, I worry that my energy will lessen rather than grow. I worry that I will find it more and more difficult to get out of bed, to get through the day, to be alone, to find meaning, to get excited about making a difference. Perhaps it’s this worry that’s led me to realize that I have to work on how to survive each day. Without that, I’ll just keep trying to create my life over and over, looking for the magic potion that’s going to finally solve everything. There is no such magic potion. All I can do is to search for a way to survive each day with a modicum of grace and sanity.

Okay, forget about the grace. I’ll take learning to survive each day with a side order of sanity. That’s not too much to ask, is it?

© 2010 by Rachel Cohen-Rottenberg

In the past couple of months, I’ve been approved for services through the Vermont Division of Vocational Rehabilitation. I’ve been working with Will, my counselor, to put together an Individualized Plan for Employment (IPE). I was supposed to go for an intake inteview with another counselor today, but I’m sick with a sore throat and a cold, so I’m taking the rest of the week off to rest my very weary senses.

Working with Will has been a very positive experience. Will is Deaf, so we communicate by writing back and forth. He is very calm and moves very slowly, so my visual field doesn’t feel like it’s filled with lots of gestures and movement while we’re communicating. Going for an hour-long appointment isn’t tiring (when I’m well). I don’t have to talk, I don’t get overloaded, and (not surprisingly) I don’t feel anxious.

My main reason for beginning the Voc Rehab process was to find part-time work outside my home and feel like part of the world again. I didn’t want to work in an office, so Will gave me a vocational assessment test to see what else I might be suited to do. I finally chose to look for employment working with animals, either on a farm or in a shelter. I figured that working with animals would get me out of the house, keep me on my feet, give me something strenuous to do, and allow me to spend some time with sentient beings who don’t talk. I’ve got lots of experience working with dogs, cats, small mammals, chickens, goats, and sheep after living on a farm for six years, so I know what I’d be getting into. In other words, I’m not romanticizing the work.

However, I think I’m being little unrealistic about myself. As time has gone on, I’ve begun to wonder whether I could hold myself to a schedule of getting someplace outside my house at a regular time on a regular basis. I do get to the thrift store regularly, but that’s just two days a week for two hours a day, and it’s a volunteer position, so it’s flexible. They’re perfectly happy to have me repair quilts at home if that works better for me, so I have some good choices there.

But I worry about my ability to get to a paid job at a specific place, at a specific time, from week to week. I’m beginning to grasp that autism is a very inconsistent and unpredictable condition. Some weeks, I love being outside, taking walks, going to the store, and gardening. Other weeks, I just want to stay inside, all week. And some weeks, I’m somewhere in the middle. I used to think that I could pace things—go out one day, stay in two days—but I’ve found that there really isn’t a pattern that matches what my body actually needs. There are far too many variables affecting my senses to be able to predict how I’ll be doing from one day to another. For instance, I could take a long walk one day, and if no one were using power tools, or playing loud music, I’d come home in a far more relaxed state than if the sound of a buzz saw or a rock band found its way through my headphones. Or, if I went outside to garden and the road were relatively quiet, I would have a very different experience than if a lot of loud kids were outside in the street talking. And then there are the variables inside me: my level of energy, my mood, how sensitive I’m feeling, whether the internal abusers are awake, and so on.

Bob has been hinting that maybe, just maybe, looking for a job outside my house is not such a great idea. For a while, I kept thinking, “Gee, way to be supportive, honey!” but I finally got his point. I got his point, oddly enough, after I wrote my post about feeling like a freak. I realized that I was at an impasse. Do I try to hold myself to a schedule, and be conventional in some way? Or do I just embrace my weirditude and accept that some days, I’m like a billiard ball bouncing off the walls, and that some nights, I fall asleep in my clothes, and that often, I do not want to be interrupted from whatever fascinating thing it is that I’m doing?

The issue came up a second time as I began to consider the possibility of applying for disability benefits. Will said that the folks at Voc Rehab could help me with the application process if I wanted to go in that direction. He even said that, during the dreaded personal interview, the Social Security employee and I could communicate in writing, and that Will would be there for support. By no small coincidence, I also received my yearly Social Security statement around that time, which showed how much money I’d get if I were on disability: $1,890 per month. No small change. I worked a lot of years, and made a lot of money, and paid a lot into the system, and there is a part of me that thinks, “Hey, I deserve that money. I worked for it, and I burned myself out to get it!” But really, I find myself at the same impasse I’ve arrived at regarding work. Do I want to try to work with a conventional bureaucracy in a conventional way, or do I want to face the fact that I feel like I’m choking to death just thinking about it?

If money were an issue, I’d probably suck it up and go the disability route. But it’s not an issue. Bob and I are comfortable and our needs are pretty simple. So what do I want to do?

Answer: I want to work. A bit. At home. As a copy editor. For our local paper. Which is edited by a friend of mine. Who would be delighted to have me, if only as a volunteer. At first. I wouldn’t have to work at the computer. I could set my own hours. I could send in my copy with Bob. I’d be appreciated for the good work I do. And somehow, it would allow me to connect to an earlier time in my life, when I was working at home during my first marriage, when my daughter was small and we were homeschooling.

At that time, I felt like my world was so small; my marriage was falling apart, and I was feeling trapped. But really, when it came down to it, the kid, the homeschooling, and the job were all working great. In fact, it was great to work at home, because I could get up and take breaks whenever I wanted, I could start and end whenever I wanted, and I could wear whatever I wanted. Now, at a time when my daughter is getting ready to leave the nest, and I am going through a mid-life crisis to end all mid-life crises, it feels good and right to reach back and find something from my earlier life to bring along with me.

Will thinks that perhaps I could work at home and also work out in the community. He feels that with some training and accommodations, it may be possible for me to hold down a job outside my house. But he’s also willing to follow my lead here, and he can certainly try and help me find other work I can do from home. At this point, everything in me is saying, “Come on, Rachel. Just be eccentric, and inconsistent, and unconventional, and follow your own way. I mean, why stop now, when you’re getting so good at it?”

© 2010 by Rachel Cohen-Rottenberg

I’m in the midst of blowing another emotional gasket over the way that my stepdaughter treats Bob and me. The pressure has been building in me for a while. I’ve been noticing that I simply don’t want to hear Bob talk about his daughter at all. I’m too angry at her. He wrote her a letter last summer, telling her that she needs to do some work, show us some respect, and deal with her issues, but nothing has changed. She has not even begun the process.

Now, it’s nine months later, and it’s Passover, and Bob’s daughter wasn’t at the table with her brother and stepsister. While Bob has been bemoaning her absence, I’ve found myself digging in my heels deeper and deeper over something she has repeatedly said to Bob. And I quote:

“Rachel has taken away everything in your life that was important to you.”

Yes, she has really said that. More than once. How do I even begin to resolve my feelings about anyone who would say something like that?

The most difficult part is that Bob keeps asking me, “What would it take for my daughter to be welcome in our home again?” I’ve finally realized that it’s an unfair question. I have no idea what it would take. I have given my stepdaughter more love, more trust, and more second chances than I ever should have, and at this point, I don’t know whether I can ever trust her again. Over the course of the past eight years, we have had some good periods, but after every good period comes a backlash that’s worse than the one before.

Her alternately minimizing and denying my autism is bad enough. That’s just plain mind-bending ignorance. But repeatedly telling her father that I’ve ruined his life? That’s malicious. I can’t think of any other word for it. Every time she says it, Bob says, “No, that’s not true. Rachel has given me back my life.”

Does it make a dent? No.

Now, I know that I did not cause this problem, and that I cannot solve it. I know that Bob’s daughter feels guilty over how she devalued her mother when she was alive, and that she wasn’t there to help care for her when she was dying, so how can she show me respect or accept my disability? It brings up too much guilt and pain. So, instead of dealing with her guilt and pain, she flings it all at me, and in the process, she’s built an impenetrable wall between us. It’s intensely painful to Bob that she’s doing this, because when it comes down to it, she’s building pretty decent walls between the two of them as well.

Of course, when she needs something, she feels free to call. In fact, she won’t make any major decision without consulting her father. And yet, oddly enough, she shows no respect for the major decisions he’s made for his life.

It’s mind-boggling. I could almost deal with this from a 20 year old. But she’s nearly 29, and it’s all getting very old. Her mother will be gone nine years next month. I respect my stepdaughter’s grief, but life moves on, and that ain’t my fault.

I don’t know what to do anymore. I have difficulties with trust in the best of times. I tend to trust people too much, and I tend to take them at their word too much, and then I get hurt. It’s happened so much with my stepdaughter that I don’t know that I’ve got another round left in me. For Bob’s sake, I feel like I should have another round left in me, but I’m exhausted.

Life is feeling so very brief these days. The older I get, the more keenly I feel my own mortality. I don’t know how much more life I’ll get to have. Maybe it will be a long life, but I don’t take that for granted. Will my stepdaughter ever come around while her father and I are still here? Doesn’t she realize how much time is passing? Doesn’t she realize how painful this is to her father, who has been there for her at every stage of her life, supporting her, cheering her on, making sure she feels loved? Doesn’t she realize that he won’t be around forever, and that she’s only creating more guilt and regret for herself in the days ahead?

I just don’t get it. I don’t think I ever really will.

© 2010 by Rachel Cohen-Rottenberg

In this month’s issue of The Sun magazine, I found the following quote by Philip Slater:

“Despair is the only cure for illusion. Without despair, we cannot transfer our allegiance to reality—it is a kind of mourning period for our fantasies. Some people do not survive this despair, but no major change within a person can occur without it.”

Those were the perfect words for me to find at this particular moment of my life. I’ll try to explain why.

After I wrote my post about self-worth, I noticed myself living with the emptiness inside, and I saw that it wasn’t going kill me. In fact, I felt like a great burden had been lifted from my shoulders. All my life, I’d struggled with improving my sense of self-worth, and now I felt nothing but relief that I didn’t have to struggle anymore. I could stop going to war about it. I could move on. Or better yet, I could just sit still.

One evening, as I sat knitting, I found myself thinking, “Okay, so I feel no self-worth. I feel empty. Yup. Empty. It’s weird. It’s sad. It’s… Hey, this hat is really coming out well…” I was just sitting there with the homespun yarn in my hands, watching myself knit around and around on circular needles, thinking about Bob spinning the yarn, appreciating the fact that the lanolin was healing the cracked skin on my fingers, and not having the pressure to do or be anything in particular. After all, I was empty of worth. What could I possibly do of any importance? Such freedom!

And then, it came to me: The empty place inside is where my parents’ love should have been. I felt no self-worth because I had never felt any love from them. And then I thought about the sexual abuse and the despair I felt when it started. I was eleven, and that was the day that I started to lose my family forever. That man who abused me was not the same man who had thrown baseballs to me in the backyard. He was not my father. It was as though my father had died, and some other man who looked like him, and talked like him, had taken his place. My mother would never have believed me, and so she was gone, too. My brother was only eight. I wasn’t going to tell him. How could I? I didn’t even have words for it. In that moment, everyone was gone, and I was alone.

Since then, not one of my relatives has expressed any love, any compassion, or any concern for me. Quite the contrary, in fact. And all these years and years of losing people started one night when I was eleven, and somehow, I knew it back then. I sensed what it meant for my life. And I was right.

I accept these losses now, but sometimes, they make me very sad. My friend Ben said that it’s okay to be sad about it all. How could I not be sad? Bob has said many times that the emotion I express most is sadness. Of course it is. How many people have I lost over the course of my life? I can’t even keep count of them all.

And then there was the despair of watching my dreams for my life drift away as my disabilities became more and more apparent. As much as I love the gifts of my autism, I’ve had to grieve for that person I thought I was, and at times, the grief has filled me with despair so deep that I didn’t know whether I’d ever be able to climb out of it.

Last week, I talked these feelings over with the doctor who manages my medication. I see him once a month for an hour. As I described what I was going through, he said that my grieving seemed to be going well. He said you know that your grieving is going well when the sadness wells up inside and you start to cry, and then at some point, you notice that you’re thinking about getting a pizza, or that you’re remembering an afternoon with your best friend when you were ten. You grieve, and you leave room for other things to enter. And then he leaned forward and said, “I’m going to tell you a secret. The grieving never ends. You just learn to carry it differently. Nobody wants to admit it, but it’s true.”

Another piece of relief, of a burden being lifted. You mean, I don’t have to resolve this grief? You mean, I don’t have to go to war against it? You mean, I don’t have to feel like an utter failure because I feel sad? How utterly fantastic is THAT?

After all, life is predicated on loss. Life ends. Jobs end. Friendships end. We end. Everything is fragile and finite. Broken-heartedness is one response to all of it. It’s my response to all of it. I’ve been broken hearted all my life. I live in a culture in which we’re always supposed to be happy and comfortable and thinking positively, while at the same time I’ve a) been assaulted by the very people who were supposed to love and protect me, b) had my senses assaulted by the world around me, and c) had my mind and heart assaulted by the madness of the world. I can’t even read a newspaper anymore. The so-called “healthcare debate” drives me crazy. How can adults in the richest country in the world not agree on how to provide universal healthcare? How can they be so arrogant and so unbearably stupid? How can they strut and accuse and lie and play politics with people’s lives?

It takes a spiritual warrior to be broken hearted in a culture like this one.

In the midst of all these layers of sadness and despair, I’ve been burning away the illusions of who I was supposed to be. I was supposed to be able to do anything I wanted. And what were all of these nebulous, terribly important things waiting for me in my future? I don’t even know. They were someone else’s illusions, I suppose. I just took them on. Now the illusions are gone, and I can feel the relief of being exactly who I am. I walk around town in a big old headset, communicate with people in writing, don’t make much eye contact, and that’s who I am—right now, right here, at this very moment.

The rest is either a dream of who I was supposed to be, or the memory of who I no longer am. I was once the mother of a small child, but no more. I was once married to her father, but no more. Bob and I once led services together, but no more. I used to work full-time, but no more.

If I keep living in what’s past, I’m living in a world of illusion, and my whole life has been about truth, about speaking the truth to my family, about dealing with the consequences, about never being able to do anything other than say what’s real, despite the fact that it rarely gets me what I want—compassion, support, friendship. But it’s who I am, and I love that it’s who I am. My whole life has been about trying to see things as they really are, and about trying to speak about them as they really are. And somehow, the despair I’ve felt has burned through layers and layers of illusion, and left me with the time and the willingness to look at the truth of my life.

At times, I’ve been afraid that my despair would swallow me alive. Some people don’t survive despair. I’ve wondered at times whether I would survive it. But then I remember that I have a fierceness inside me, like an unquenchable flame. Somehow, the despair has taken my fierceness and used it burn through so many illusions that I am left empty and can begin to live.

© 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

In my last post, I discussed my commitment to move ahead with my life in the knowledge that I have no extended family. That reality is still very clear to me, and I got a very vivid reminder of it last night.

As you might have noticed, I have a rather large extended (former) family, with many, many cousins. At this moment, I’m turning my attention to a cousin I’ll call Boris. I haven’t seen Boris in 30 years or more. I never knew her well, but over time, a couple of people in the family made remarks to the effect that she might have been abused as a child. As cousin Ralph might point out, I have no way of knowing one way or the other. Boris herself has never said anything about it. If she did, I would believe her, but we’re never going to get anywhere close to that conversation.

Read on for details.

After I had scattered the ashes of my hope for an extended family, my conscience started to bother me about Boris. What if she were another survivor? What if she thinks she’s the only one? It didn’t feel right to simply go away without saying something to her, but what should I say? I stewed on it for awhile, and I finally realized that all I needed to do was to give her my contact information, in case she ever wanted to get in touch with me. (Please stop groaning.) So, I sent her a message that was as benign and as neutral as I could possibly make it:

“Hi, I’m your cousin…I now go by my Hebrew name of Rachel, and I’m married. If you ever want to contact me, you can reach me at rachel.vermont@comcast.net.

I hope that all is well with you.
Rachel”

I knew that the family lie had made it to the outermost reaches of my (former) family, so I knew it was entirely possible that the lie had made it to her door. I felt good in my heart for having done the ethical thing, and that was all that mattered to me. And so, I was prepared for her to ignore me, or to simply say “Fuck off.”

But no. Nothing is that easy in my (former) family. I’ll paraphrase Boris’ response. She said:

1. She doesn’t have a cousin anymore.
2. Her losing me as a cousin was my choice.
3. I have to live with my choice, so go to hell.
4. If I ever contacted her or any member of her family again, she would seek out a civil harassment restraining order.

I will never have to get all “Aspie-and-wordy” again to describe the toxic nature of my original family system. You have the whole family dynamic in a nutshell, right here: shunning, blaming, distortions, lack of compassion, and unprovoked threats. There it is. All on a platter, along with my head.

And why? Because I offered someone I barely know my email address and said I hoped she was well.

Okey dokey.

So, then I got to talking with Bob and with a good Aspie friend of mine about this latest turn of events, and I suddenly realized that I was being bullied. Moi, bullied? I thought. Moi, with a blue belt in karate? Moi, with 25 years of therapy under my belt? Moi, the mama bear who has been known to risk reputation and throw social graces to the wind on behalf of her (now nearly grown) little cub? Yes, I’m afraid so.

And then, I thought, wow, that’s exactly what happened with my parents and with my brother. They bullied me. My father bullied me with physical pain, with unwanted touch, and with threats of harm. My mother bullied me with lies, ridicule, and manipulation. My brother once pinned me to a car because I disagreed with something he said, and he shunned me when I broke contact with my parents. And then there was Uncle Sylvia, and our disastrous conversation of three years ago, in which he ridiculed me for asking for love and compassion over what I had suffered. And come to think of it, every single family member who has heard the lies about me and believed them has been bullying me with their silence and their rejection ever since. It’s absolutely amazing to finally realize it.

All this bullying, all directed at me. Innocent, good-hearted, clueless, Aspie me. But why? I have a few ideas. (Feel free to add your own).

1. I walk into every room thinking that people are all set to receive love, attention, and goodness from me. I just have to be clear and non-threatening, and we’ll all get along, right? What could be simpler? Ha ha. It’s not bad to want to be loving and attentive, but the expression “pearls before swine” keeps coming to mind.

2. I am very childlike. I have a kind of innocence that all the abuse in the world has never been able to take away from me. So, I figure that people feel powerful bullying an innocent person. Or something. I have no idea. It’s just a guess.

3. For much of my life, I tried so eagerly, so earnestly, and so innocently to figure out the rules and play by them that people began to see me as defenseless. And, as a kid, I was defenseless, just as any other kid. But for me, there was an extra element of defenselessness, because little autistic me could not understand lying, cruelty, social rules, and social hierarchies. I just kept trying to make sense of them and be everyone’s friend. That made me more than a little vulnerable.

4. Despite my once-unquenchable desire to figure out the rules, fit in, and be normal, I have always been the Achilles heel of the family. Why? I’m an Aspie. I speak the truth. I break illusions. As such, I am the person who is the ever-present reminder that the family ain’t nearly as perfect as everyone would like to pretend it is.

5. I am the person who left the bullies behind. A dysfunctional family system cannot tolerate people leaving just on account of they’d rather not be bullied.

So, I reach out to someone genetically related to me, on the off chance that she might need it, just to feel that I’ve done the right thing, and the whole family system comes roaring right at me.

God, I’m having a serious autism moment. The gig has been up for a long time, and I’m the last to know.

Comments and hugs both appreciated.

© 2010 by Rachel Cohen-Rottenberg

Don’t worry: I’m not obsessing about death.

In fact, I’m planning on living on planet Earth for another fifty years. I figure I’ll need at least that long to understand my life and write about it. It’s a good plan, don’t you think? While I don’t discount the indisputable wisdom of the Yiddish saying, “If you want to give God a laugh, tell him your plans,” I know that God will make an exception for me. How do I know this? It’s simple: I’ve communicated my needs clearly, I’ve come up with a sound plan, and God knows, I need predictability.

So, while my tenure here on earth is assured, I often wonder what will happen after my soul departs my (101-year-old) Aspie body. In fact, over the course of my lifetime, I’ve had a number of theories on the subject, all of which I will now impart to you.

1. Ages 4 to 9: Don’t ask because you can’t know.

This theory came courtesy of my mother after I asked her about God. I’d heard this “God” word from someone, and I’d wondered what it meant. Here’s how the conversation went:

Me: “Mommy, who’s God?”
My mother: “God created everything.”
Me: “Okay. So where’s God?”
My mother: “God is in everything. God is in you, in me, in the air we breathe, and even in the kitchen table.”

[At this point, I have my first mystical experience. I can feel God in every molecule of the air, very close to me, but not crowding me. Then, I look at the kitchen table, and it's radiant with light.]

Me: “Who created God? And who created the God that created God. And who created the God who created the God who created God?”
My mother: “Don’t go there. You’ll drive yourself crazy.”

For nearly every other moment of my childhood, my mother was an ardent atheist without a spiritual bone in her body, so I’ve always considered this conversation to be the product of some sort of Divine intervention. In addition, despite the fact that my mother had not been taught anything about Judaism, she somehow communicated one of its core tenets to me: the absolutely unknowable mystery that is God. At that moment, I grasped that not only was God a mystery, but that everything concerning God was a mystery, including the question of what happens before birth and after death.

2. Ages 10 to 12: We’re born, we suffer, we die, and that’s all there is.

This theory also came courtesy of my mother. It’s the core tenet of that good old-time religion called “Jewish atheism.” Yes, trust me, Jewish atheism is a religion. Sometimes, it’s called “secular humanism,” and sometimes it’s called “democratic socialism,” and sometimes, it’s just called “Get your Bible out of my face and allow me to make the world a better place than I found it.” In my parents’ case, it was called “We’re just a bunch of molecules bouncing around the universe with no purpose whatsoever.”

3. Age 13: I am definitely going to hell, and it will be very, very painful.

This particular stage in my thinking came from a televangelist whose name I can’t remember. Why was a nice Jewish girl like me watching a televangelist, you ask? Well, my parents always watched the Billy Graham Crusade on TV. They didn’t watch it for the spiritual content. They watched it rather like anthropologists who have no respect for their research subjects. I can remember my father, in particular, being appalled by the spectacle of fear being used to elicit faith. My parents detested religion, and to them, the Billy Graham Crusade was a prime example as to why.

But somehow, all the fear-mongering got to me. One night, while I was lying in bed, I turned on the little TV I’d gotten for my birthday and found a station on which a televangelist was preaching. He said that whether your sins are big or small, it’s all the same to God. If you don’t accept Jesus as your Lord and Savior, you will burn in the everlasting fires of hell. However, if you do accept Jesus as your Lord and Savior, every single sin will be wiped away for all eternity, and you’ll never have to worry again.

Oh my. I did not want to burn in hell. Definitely not. And it all seemed so easy: I could become a Christian, and all my worries would be over. I was a very worried little Aspie, so the deal sounded good. There was one catch, however: I was Jewish, and I was pretty certain my parents would throw me out of the house immediately if I became a Christian. 

So, for next three weeks, I spent most of my time obsessing over every small thing I had ever done wrong in my life. (I hadn’t lived very long yet, so my recall was quite good.) When I was finished with the backlog, I obsessed over all the little things I was doing wrong in the present, many of which I probably wasn’t even aware of yet. And then, of course, there were all those things I might do in the future. It was overwhelming. The more I thought about the inevitability of screwing up, the further I descended into a state of abject misery.

One Saturday morning, at Hebrew school, I told my friend Caryn what was going on with me, and she miraculously lifted the burden from my shoulders. Here’s the conversation:

Me: “The televangelist says I’m going to hell if I don’t become a Christian.”
Caryn: “You’re not going to hell.”
Me: “How do you know?”
Caryn: “You’re Jewish. We don’t believe in hell.”
Me: “You sure?”
Caryn: “Yup.”
Me: “Okay. I feel better now.”

4. Ages 14 to 22: “It’s not worth thinking about. After all, I’m immortal.”

5. Ages 23 to 33: “I want a husband, kids, and a career. I simply don’t have the time to spend worrying about what happens after I die. I’m too worried about what’s going to happen while I’m still alive.”

6. Ages 34 to 40: “If I’m a good person, I will have everlasting life (whatever that is). If I’m a bad person, I will simply cease to exist altogether. That wouldn’t be good.”

7. Ages 41 to the present: “I will be reincarnated many times, in many places, depending on what I learn in each lifetime.”

There is a Jewish belief in reincarnation called “gilgul,” which basically posits that we return to this earth many times in order to make things right from a past life or to help others along their life paths. This particular philosophy appeals to me tremendously, because it explains so much:

a) Why some people do so much evil and others do so much good. What can explain the fact that Adolf Hitler and Mother Teresa once inhabited the earth at the same time? Are some souls simply born evil and others simply born good? No, that can’t be. If we’re hardwired to be good or evil, then there can be no free will and no morality. So, perhaps, Mother Teresa had been reborn thousands of times and had learned profound wisdom along the way, while Adolf Hitler hadn’t been around much and was therefore operating under a series of extremely dangerous delusions.

b) Why I got born into my abusive family. It took me a long time to work this one out, but I’ve come to feel that I actually chose my parents. That does not mean it was okay that they were abusive, or that I asked for it. It simply means that my soul might have seen the potential lessons to be learned through them (without knowing the details), and that I decided that I might as well give them a try. I’m also thinking that if I were as impatient in the spirit world as I am in this world, I may have been getting restless with the whole “being between bodies” thing and acted rashly.

c) Why I’m autistic. Maybe in a past life, I was a smug neuro-typical person who thought I had all the answers. You can’t learn anything that way. So, I came back as a periodically smug autistic person who more than occasionally thinks she has all the answers.

Hey, I’m doing my best.

Of course, I don’t really know what will happen. I guess I’ll find out in the afterlife. Or not. Who knows?

© 2009 by Rachel Cohen-Rottenberg