In response to people who tell me that I’m too angry at the ways in which autistic and otherwise disabled people are treated, all I can say is: I’m not angry. I’m not having a personal feeling that I need to resolve. No. I’m outraged. I’m having an ethical response to a society that needs to right its wrongs. I’ve been outraged all my life at injustice and needless suffering, and I always will be. I consider it an ethical obligation of the highest order.
© 2011 by Rachel Cohen-Rottenberg
I’ve been having a crisis, of late, about my place in world. Kind of a big, high-flying topic, I know, but I seem to have somehow brought it down to earth today.
Whenever I try to explain the crisis, I have difficulty finding words that don’t make me look like a total schmuck. So I’ll just say it outright: I don’t feel particularly important in the world.
Now, before y’all start telling me that I am important, let me just stop you in your tracks and say, I know I am. We all are. We all have a purpose in life that no one else can fulfill. But it’s the definition of important that’s changed drastically for me, and the difficulty of letting go of the old definition is a measure of how completely bankrupt it really was.
The old definition had to do with achievement and recognition. For me, it was never one or the other, but both. I’m sorely tempted to list out all my achievements for you, and all the ways I’ve been recognized for them, but that’s the problem. I want to list them out, to be impressive, to say, “Look at me! Look at me! See how important I was…I mean, am!” But I won’t. Let’s just summarize and say that it has to do with my education and my work life, and leave it at that.
And all that is largely in the past. I want to get another master’s degree, partly for the sense of accomplishment, but mainly because there are a lot of things I’d like to study, and a master’s program would be a good structure in which to study them. But recognition? What’s it going to buy me, exactly? What do I really want?
What I want is some peace in the midst of all of the storms. I want to be able to have my outrage, speak my piece, and then have my peace. I want to fight the good fight and, whether I win or lose, know that I’ve won, because I did what was right. And I want to just live my life, and not worry about how I’ll deal with whatever the next storm happens to be.
Some time ago, I went to see a healer who told me that every soul brings into this life an error in perception that must be healed. I’m not so sure about that—I mean, how can one be sure about spiritual matters?—but I was willing to listen and see whether there might be a truth in there for me to pursue. She then proceeded to tell me that my soul’s error was to believe that I could not handle whatever came my way.
She nailed it. She absolutely nailed it. I don’t know whether I’ve accumulated this error over several lifetimes, or I just inherited this fear from my parents, or what, but I really don’t care. Somehow, I’ve gone after achievement and recognition all my life because I thought that it would protect me against all those difficulties that other people have to go through.
Not me. Oh, no, no. I’ve had enough difficulty for one life, thanks. Other people can take it from here. Not too much entitlement in my thinking there, eh?
I seem to have gotten past that foolish idea. Or, better said, life has seen to it that I get past that foolish idea. I’ve been through a lot of difficulty over the past 10 years. I feel like I’ve been stripped down to my essentials. It wasn’t anything I could have avoided. I didn’t cause it, and I couldn’t cure it. It all just happened. It’s as though life said, “Welcome to the human race, Rachel. Nice to see you’ve finally arrived.”
So here I am, needing to find another way to have peace. I know that part of having peace is to walk a spiritual path, and it’s been a long time since I’ve done that mindfully. But for me, having peace means more than that. It means finding purpose, and in the absence of all the Big Important Things I used to do in the world, I’ve been wondering what on earth that purpose could be. And then I started tripping over it, again and again, until I couldn’t miss it.
It started this past Thanksgiving. My husband was spending the day with his kids in Colrain, and I was spending the day with a friend. The plan was to get together at my house, have some food, and watch a show. I wasn’t planning anything grand, but I offered to make us dinner. My friend has a number of sensory sensitivities regarding smell and taste, and she warned me that, whatever I might make, she might very well not be able to to eat it. She said that she’s used to having to bring her own food, and that I shouldn’t feel badly if she couldn’t eat mine.
She clearly felt worried that I’d be feel insulted or annoyed, so I let her know that it was totally fine, and that since I was going to make myself a nice dinner, I’d just make double, and she could have some if she wanted to. So, Thanksgiving came, and I made some chicken and potatoes. I fixed it in a way that she liked, and we watched a movie while it was cooking. When it was time to eat, we came down to the kitchen, and I brought the food into the dining room. I was yacking about something or other, when I looked up and saw my friend frozen at the threshold of the dining room, looking really scared and upset.
I asked what was wrong, and she said she felt embarrassed, but somehow, she just couldn’t look at the piece of chicken on the bone; the thought of it having been a bird was freaking her out. She started to cry. Now, I know for a fact that your average person would have said, “Oh, for goodness’ sake. Don’t be ridiculous! It is a bird. Deal with it!” But I have had people say just those kinds of dismissive, insensitive things to me too many times, and it just isn’t in me to go there.
So I just went over and gave her a hug, and asked what I could do to make the situation work for her. She asked me to take the chicken off the bone and cut up the chicken into small pieces, so I did just that. And while we ate, I blocked her view of my chicken pieces so that she could enjoy her meal. And she was happy. I mean, really, really happy, in a way that only those of us who feel uncomfortable in most places in the world can truly understand. It was a small thing, but no small thing. After all, what’s more important than people feeling safe and respected?
And then I really saw it: This is what I do. I hold safe space for other people. I deserve no credit for it, any more than I deserve credit for being 5’1″, because it’s just instinctive. I know that it’s not in any job description or degree program on the face of the planet, but it’s what I do, and I do it well. It’s the reason that during my daughter’s growing-up years, all the children having difficulties at home ended up gravitating to our house. It’s the reason that my daughter’s best friend is now living with us. Yes, I now have two teenagers, born a little over two weeks apart, living in my house, sharing a room. And I’m ecstatic to be able to do it.
It’s not that there won’t be challenges. Any time you get people living in a house together, there are challenges, but I have a better sense of how to approach them now than I’ve ever had before. Some time ago, on Diane’s blog, we had a discussion about the difficulties we have when our kids go through tough times and we can’t solve things for them. So many of us who are “fix-it” moms have just this problem, and in responding, I realized that I’d already come upon the solution. Here’s what I wrote:
I know that feeling of “needing to be needed” and being the fix-it person. It probably accounts for why my daughter’s entrance into the teenage years provoked such a crisis in me. It’s not as though I had to let go all at once, but at some point, it hit me very hard that she was going through things that either she didn’t want to tell me about, or that I couldn’t fix even when she did. After all those years of intense child-raising and homeschooling, adjusting to her being at school all day and entering that phase of life in which she just didn’t depend on me so much was really hard.
The thing I figured out, which might help here, is that I’m still very much needed, but it’s more like “need in waiting.” I’ve joked for a long time that my job has become to knock on Ash’s door, say “Hi, hon. Need anything? No? Okay. Going now.” And if I just concentrate on those few seconds, it’s awful. I feel obsolete. But then I realized that what I’m really doing is holding the space in the house for her to walk into when she needs support, or wants to talk something out, or wants to share something. It’s a critical job. I think our kids really need us to hold that space in order to feel secure, and it’s pretty much a full-time job, since it entails taking care of ourselves and being present to what’s going on.
It sounds like you and I both need to know what our “job” is at any given time, and sometimes the job is just to create the mother space, you know?
I had no idea when I wrote that how much holding the mother space was just one iteration of what I do, but now it’s clear. The other night, when I met up with some fellow autistics in town, I offered my art studio space to a guy who wants to do some programs with kids on the spectrum. I let him know that the space would be there, and that he didn’t need to feel hesitant about asking for it. I was also able to articulate that, while I can’t do all the face-to-face things in the world I once did, I am very good at organizing things and supporting other people as they find their way. Later on, he told me that a lot of the anxiety he’s been dealing with for awhile began to dissipate after sitting with us and getting that kind of support.
It was music to my ears.
Truth be told, though, it’s kind of a strange job, holding the space. I mean, I keep thinking, I should be engaging more. I should be more assertive. I should, somehow, demand a place in the center, at least some of the time. But that’s all nonsense. I do have a place in the center. We’re all in the center. I don’t need to keep fighting for space with people. When I feel the need to compete for space, I’ve stopped creating spaciousness, and that’s what I need to do.
I don’t need to have a big physical space to do it, either. It can happen anywhere, and it does.
But I worry, sometimes, about who will hold the space for me when I need it. And then I think, I will. And my husband will. And my daughter will. And my friends will. And you all will, because you all do.
© 2011 by Rachel Cohen-Rottenberg
One of the oddest results of my Asperger’s assessment was my lightning-fast transformation from “regular human being” to “collection of impairments.” I really hadn’t changed at all from the minute before my assessment to the minute after my assessment and yet, the way in which the world saw me began to change in significant ways. And because the world began to see me differently, I began to struggle with my sense of myself all over again.
I’m not sure that I can explain to someone who hasn’t been through it, or who hasn’t watched a loved one go through it, the devastating impact of the way that people see autistics. The insistence on looking at us through the lens of deficit is so extreme that we begin to see “deficit” as key to the definition of who we are. I have difficulties with eye contact: deficit. I can’t read nonverbal cues: deficit. I like routine: deficit. I can’t do small talk: deficit. I can’t lie: deficit. I can’t be indirect: deficit. I’m blunt: deficit. I depend upon my lists: deficit. I stim: deficit. And on. And on. And on.
How dare anyone define us in terms of what we can’t do? In my worst moments over the past two years, I’ve felt like a piece of swiss cheese, recognizable only by what isn’t there.
So, what did I do to find my way back to a sense of wholeness? I started looking at my strengths. The truly mind-bending result was that, once I had the autistic label, even my strengths started looking like deficits. I’m gifted at discerning patterns and organizing the objects of space: Those are just splinter skills. I can focus like a laser beam on any task: I am inflexible. I am good with the written word: I’m overcompensating for my difficulties with verbal communication. I have a keen eye for hypocrisy: I just don’t understand the usefulness of social forms. I value my non-conformity: I just don’t understand the usefulness of social forms. I’m very good at discussing subjects of mutual interest: I just don’t understand the usefulness of social forms. I express empathy by asking what a person needs from me and then doing it: I just don’t understand the usefulness of social forms. And on. And on. And on.
At some point, my healthy sense of outrage began kicking in and, in addition to reclaiming my strengths as actual strengths, thank you, I began reclaiming my so-called “deficits” as actual strengths, too. I have difficulties with eye contact because I am so sensitive to the information coming at me from a person’s eyes. I can’t read nonverbal cues because I am so sensitive to the fullness of a person’s energy. I like routine because I’m an organized person. I can’t do small talk because I’m sincere. I can’t lie because I’m ethical. I can’t be indirect because I’m honest. I’m blunt because life is short and there is much to be done. I make lists because I’m responsible and don’t ever want to forget to do anything that someone, somewhere, might be depending upon me to do. And I stim because, in case someone hasn’t noticed, the world is a pretty noisy, chaotic place full of highly irrational people, and I just need a little soothing. That’s a problem?
It’s a lot of work to have to continually fight this battle against the impact of the autism discourse. And what’s most exhausting is the fact that every time I fight this battle, I’m reminded that words like deficit, disorder, impairment, and disease permeate most discussions about us. That’s when I’m back to feeling that something is wrong with me, something that the literature calls a pervasive developmental disorder rather than simply a difference. Gee, thanks. Just when I thought I’d defeated the demon of pervasive wrongness, there it is again, and this time, it isn’t just my abuser doing the talking. Well-respected professionals, loony-toon wackos, and everyone in between can all agree on it.
Wonderful. But here’s the way I look at it: If all that someone can see are all the things we can’t do, and all the things we aren’t, rather than all the things we can do, and all the things we are, I’m not sure I can do a thing about it except to refuse to participate.
That’s when I return to the pivotal moment on my healing path: I have a pure soul. If there is one thing that is pervasive, that touches everything I do, it’s the spark of the Divine in me, and that spark is far more powerful and far more valuable and far more sacred than anything else. If all that someone can use to describe me is the language of deficit, disorder, and impairment, that’s the other person’s illusion, not mine. I don’t have to take it on, and I won’t. All I can do is to stay clear in my mind that a society that defines people by what they can’t do is a society with a pervasive problem, and the problem isn’t us.
© 2010 by Rachel Cohen-Rottenberg
Spoiler and trigger warning: In this post, I talk about having survived childhood abuse.
For the most part, having survived abuse is not a topic that occupies my mind very much anymore. I still have post-traumatic stress issues that I will probably deal with for the rest of my life, but they don’t inhibit my ability to navigate. I work with them or I work around them, depending on the day, and being able to do so has become a source of power and self-confidence.
In this post, though, I’ll talk about the abuse. I’ll talk about it because the abuse itself once threatened my ability to have any sense of self at all, and because struggling with its legacy has been the key to having a secure sense of who I am.
I was emotionally abused throughout my childhood. I was also physically abused from the time I was 4 until I was 19, and sexually abused from the time I was 11 until I was 19. The abuse stopped after I fled the scene, moving three thousand miles away to California. I no longer have any relationship with anyone in my original family, as my blood relations are either in denial or simply don’t care.
I want to say outright that I don’t have any kind of hierarchy in my mind about which form of abuse is “worse,” because for me, the only important dividing line is the one that separates being safe from being unsafe. For a long while, ranking one kind of abuse as worse than another became an exercise in minimizing and controlling my pain, and it was a great relief to stop.
I finally gave myself permission to stop over twenty years ago, after sitting in a support group with a woman who was actively recovering memories of the most hideous abuse imaginable. Each of us got a session in which to tell our stories, and when this woman told hers, everyone else in the group responded with a variation of, “I feel like I don’t even have the right to be sitting here with you. My abuse wasn’t nearly as awful as yours.” Her mindful, compassionate, and altogether accurate answer was, “There is no such thing as better or worse when it comes to abuse. Once someone forces us to cross that line, we’re all in this together.”
One aspect of her struggle that we all shared was the visceral sense that the abuser had somehow taken up residence in our minds, our hearts, and even in the cells of our bodies. Particularly regarding the sexual abuse, I felt that I would never be able to rid myself of the way it pervaded my awareness of my own being. For a long time, I felt as though the abuse were circulating through my body and that with every beat of my heart, it was making me feel dirty and broken. How could I possibly heal? How could I possibly keep up with the messages of self-hatred that were spreading inside me? How could I tackle them quickly enough to defuse their power? Having been born with a very healthy sense of outrage, I was very, very angry that the ugly messages seemed to have become an inextricable part of me, and I rebelled against them even when I felt utterly done in by them.
As it turned out, rebelling against them helped me see that the idea that I had been dirtied and broken was an illusion—that it was a feeling, not a reality. I came to this understanding through teachings from my own culture about the purity of the human soul. I know that not every culture has these teachings, and I know that there are many paths to healing. This one just happens to be mine.
Judaism teaches that we are each born with a pure soul, that we each die with a pure soul, and that nothing that comes between our first breath and our last breath can change that. At the core of this concept is the belief that when we are created, a spark of the Divine enters us and becomes the soul. Because the Divine can never be broken or made incomplete, the soul within us shares that indestructibility and wholeness. And so, whatever is done to our bodies, our souls are perfectly resilient and incorruptible.
As I meditated on these things, I came to feel that much of the evil that was done to me consisted of making me forget that I am perfectly fine. I have struggles, yes, but I am not the same as what has happened to me, what has been done to me, and what has terrified me. At the core of my being, through all the pain and confusion that clouds my path, I am separate from the storm, and I am perfectly whole. In these teachings, I found my connection to the Divine, not as a self-other relationship, but as a deepening sense of immanence, awareness, and shared existence. I am no longer religious, as I once was; I seem to have little need for most religious ritual or study anymore. My husband says that I’ve internalized it all, and I think he’s right.
For many years, I thought I’d never again have to struggle against that sense of being compromised, broken, and wrong. Then, I got the Asperger’s diagnosis. After the initial rush of “Yay! That explains everything!” came the second wave of becoming profoundly aware of the language of impairment, disorder, deficit, and disease that permeates most conversations about autism.
That’s when I started to really believe in karma. I don’t mean the idea of karma that says you get punished for something you did in a past life. I mean the idea of karma that says that each person comes into this life to struggle with and learn about a core issue, and that we keep getting the same lessons over and over in order to strengthen our understanding. For me, as for a lot of people, the question I’ve had to grapple with all my life is “How do I maintain my power when everything around me keeps telling me that something is wrong with me?” If you’re autistic and want to live a happy life, I think that this question is key.
In my next post, I’ll talk more about how I’ve grappled with it.
© 2010 by Rachel Cohen-Rottenberg
On more than one occasion, friends and loved ones have shared with me the following definition of insanity:
Insanity is the process of doing the same thing, over and over, while hoping for a different result.
Personally, I think that’s a fine definition of insanity, so I’ve been looking at my recent debacle with my cousin Ralph and trying to decide whether my behavior meets the criteria. Certainly, after countless disastrous interactions with my original family members, my willingness to toddle over to my father’s side of the gene pool, hoping for a civil and productive conversation, might seem a little, well, nuts. But was it?
I don’t think so. I’ve begun looking at the disaster with cousin Ralph in a more spiritual way, using the Jewish idea of teshuva, which means “return.” Generally, we talk about doing teshuva when we’ve done something wrong; we acknowledge the wrong, we make amends, and we pledge not to repeat the mistake when the same situation arises again. If we can do those things, then we have returned, both to our original pure selves and to a state of harmony with others.
So I’ve been thinking: Why was I creating another cycle of return to the same place with my original family? What had I done wrong before, and what was I trying to do right in this interaction with Ralph?
My last less-than-ideal contact with a family member had taken place about three years ago. I contacted my uncle Sylvia (not his real name), hoping to reconnect. I was unsure of how or when to bring up the abuse, but I figured I’d find an appropriate moment. Unfortunately, as soon as Sylvia got my first email, he did an Internet search on my name and found a post I’d written about being an abuse survivor. As a result, the proverbial shit had hit the proverbial fan before we’d even begun.
At first, Sylvia questioned the idea that my parents could ever, ever have abused me, but a short time later told me that I had taken revenge on them by breaking contact. Revenge for what? I asked. For stuff that didn’t happen? No matter how many times I told him that I was interested only in my own survival, and that revenge had never been part of the equation, he couldn’t hear it. With each iteration, he got nastier. By the end, I pretty much broke down in a mass of tears and self-hatred, waved a white flag, and ended the interaction feeling like a victim. Again.
This time around, with cousin Ralph, a similar dynamic occurred, although to her credit, cousin Ralph did not get nasty with me in the way that uncle Sylvia had. However, the same mind-boggling question-the-abuse/acknowledge-the-abuse contradiction was there, expressed in emails containing such statements as “I have no basis on which to believe you” and “I had no idea you came from such a dysfunctional family.”
Excuse me for a moment while my head stops spinning.
There was also quite a bit of, shall we say, lying regarding the family photos. In one of her first emails, cousin Ralph had said that she had “many more” photos to send after the initial batch. In one of her last emails, however, she said that she’d just “scoured” the family albums and, well, gosh darn it, she just couldn’t find any more photos. Sorry! So sorry!
I hate it when people lie. I’d rather they just said, “Get the fuck out of my face.” That I could understand. Lying perplexes me. My Aspie brain just can’t quite believe that it’s happening. Why lie when you can just come out and say something? (That was a rhetorical question.)
Anyway, at some point in the interaction with cousin Ralph, I finally realized that I had to give up on having an extended family. I mean, I really, really had to give it up. And so, my friends, I must inform you that, during the past week, I made the difficult decision to remove from life support my brain-dead hope of ever having an extended family of people who share my DNA. (Services were private; in lieu of flowers, please make a donation to the charity of your choice.) After the cremation and scattering of the ashes, I was feeling very sad, so Bob wrote me the following beautiful email while he was in New York:
Hi love — Thinking more about Ralph’s e-mail, it seems to me that your decision to move on with your life as if there is no family is the right one. No matter what Ralph may or may not be willing to do in terms of a potential relationship with you, her email is simply another “missed opportunity” for people in your family to reach out to you in a loving, compassionate, understanding way. Whatever her reasons were for responding in the limited way that she did are her reasons, and have little if nothing to do with you. And hasn’t this been the problem all along? That no one has considered how you must feel about any and all of this?
And to me, that’s the real tragedy, and the source of the sadness I’ve been feeling lately about the absence of real family in your life. It underscores what you’ve been saying for all these years — that you’re a good person, that you’ve done nothing wrong, and that you deserve better from your family.
Sad to say, those are all good reasons to say goodbye to them. To close the door and move on down the road. The line from a Mary Black song goes something like, “We’ll never see what lies ahead if we’re always looking back.”
As I re-read these words last night, it came to me: I must end the interaction with Ralph with dignity. I cannot end it feeling powerless and screwed over. If I do, I’m just a victim again, just as I was in my interaction with uncle Sylvia, and just as I was in childhood. I must stay out of the victim place.
Sometimes, that’s hard for Aspies, because the world can feel like such a hurtful and incomprehensible place. But I can’t be a victim in this world. My innocence, my trustworthiness, and my truth-telling are some of my best qualities, and just because people occasionally take advantage of them doesn’t mean that there’s something wrong with me. So, with all these thoughts in mind, I gathered myself together and wrote the following email:
Dear Ralph,
A few days ago, I wrote that if you believed what I said about my childhood, you should write to me, but that if you didn’t, you should continue your silence. When you responded by saying that you didn’t have any basis for believing me or not, I should have stopped our communication right there.
I don’t have any physical evidence that proves anything I say, so if evidence is what you need, I’m afraid I can’t offer any. I have no medical records or reliable witnesses, no police reports or other testimony. All I have is my own truth, my own integrity, and an abundance of other people who believe me. Some of these people have never met me in person, and some haven’t seen me in over 30 years, and yet, they still believe me, and they still express compassion and support for me. And why not? What do they have to lose? Nothing. Absolutely nothing.
That’s what I need in my life. That’s what I’ve been trying to say.
Let’s end our communication here and wish each other well.
All the best,
Rachel
Now to me, that’s teshuva. I’ve gone through another cycle of the family craziness, and this time, I’ve come out sane. I’ve returned to my true self—not a victim, and not even a survivor, but simply a whole, decent, self-respecting human being.
© 2010 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
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
Journeys with Autism by Rachel Cohen-Rottenberg is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Journeys with Autism