Journeys with Autism

Something extraordinary has happened: my life feels ordinary. And I mean that in a good way.

Part of the reason is that my withdrawal from the evil benzo continues to go well—not always easily, but well. I’m now down to .4 mg per day. On Monday, I started using the liquid version of the medication, so I don’t have to split my teeny tiny pills into quarters anymore. I am so relieved. I take just one drop in a bit of applesauce, four times a day, and instead of cutting my dose every week, I’m now cutting my dose every three weeks. From what I understand, I need to go slowly from .5 mg to zero because my brain is waking up, and it’s important that it wake up gradually, rather than all at once. So, I’ve made myself a reasonable schedule, my doctor is supportive, and I should be off the meds by the end of the year. Can’t wait…but I have to.

Having tapered off the medication by more than 1.5 mg, I feel alive again. I still have my sensory-sensitive “I don’t-want-to-go-anywhere” days, but even on those days, I force myself to go out for a walk in a quiet place, just to keep my connection to the world intact. I’ve finally figured out that my connection to the world is not limited to the world of human beings, but to all of creation, so I walk and appreciate the trees, and the colors, and the breeze blowing, and even the incredibly humid weather. I carry my camera with me everywhere, and I’ve been taking lots of pictures, which helps me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world has become one amazingly interesting place. I’ve also started drawing and painting, so my eye is growing keener by the day.

But the med withdrawal only explains part of it. Mostly, I’m having an experience that I can only describe as an ever-deepening sense of being fine just as I am. I don’t feel inclined to explain myself, to justify my earplugs, to overcome my lack of small talk, or to pathologize my fascination with the visual world. I don’t feel that I have to stay anywhere any longer than it works for me, or apologize for what I can’t do, because after all, who can do everything anyway? No one I know. Far from it.

Above all, I seem to have made a surprising amount of peace with my essential aloneness. I’ve been reading a book called The Wounded Healer by Henri J.M. Nouwen, and it’s been giving voice to many things I’ve been feeling for a long time. The book is written from a Christian point of view, which makes parts of it very hard going for me, but there are moments in which the author’s theology falls away and the book just sings to me. For example, Nouwen writes that the condition of every human being is to be lonely, and that if we don’t accept our loneliness, we make all kinds of demands of the world that leave us wrecked. From his perspective, the only thing to do is to embrace this loneliness, knowing that it is the experience of all people, and to let others know that they are not the only ones. This task, in and of itself, is a terribly lonely one. Like the bodhisattva who cannot share his experience with many and yet allies himself with all, the person who embraces her loneliness knows that, most of the time, most people are trying desperately to flee their own.

This insight echoes what I’ve long felt: that being autistic, I am no more lonely than anyone else, but that others have many more social opportunities to run from their loneliness than I do. I have to face my aloneness, whether I want to or not. When the day is done, though, and the darkness comes, and people return home to empty houses and the privacy of their own souls, we share a common experience. In describing the life of the minister, Nouwen could very easily be describing our lives as autistic people:

“The painful irony is that the minister, who wants to touch the center of men’s lives, finds himself on the periphery, often pleading in vain for admission. He never seems to be where the action is, where the plans are made, and the strategies discussed. He always seems to arrive at the wrong places at the wrong times with the wrong people, outside the walls of the city when the feast is over…The wound of our loneliness is indeed deep. Maybe we had forgotten it, since there were so many distractions. But our failure to change the world with our good intentions and sincere actions and our undesired displacement to the edges of life have made us aware that the wound is still there…When someone comes with his loneliness to the minister, he can only expect that his loneliness will be understood and felt, so that he no longer has to run away from it but can accept it as an expression of his basic human condition.” (86-92)

These words just knocked me out, in the same way that discovering my autism knocked me out. In both cases, my life suddenly came into focus, and I found a mirror in which I could recognize myself. Now, I no longer go about my daily life looking for the magic key, or the decoder ring, or the person who will unlock the mysteries of the world so that I can enter. I’ve already entered. I’m here. The world belongs to me, as it belongs to every other creature that exists, and I experience things essential to being human. So now, I enjoy my forays into the world. I go to the co-op to buy a few items of food, and I no longer dread it. It’s still not easy to go food shopping. I still have to block my hearing, communicate with my “I can’t hear you” cards, and limit my time and energy so that I don’t overdo it. But somehow, all of that is all right. I look forward to buying food that nourishes me, being kind to people, and enjoying the walk.

I’ve also been going to the art store to buy supplies, and it’s fun. Yes, fun! Yesterday, I ran into two autistic friends there. It felt so good to know others, and to be known. I took out my earplugs a bit and talked. We didn’t talk for a long bit. I know when I’m reaching my limit, and I respect that, and lo and behold, other people do, too. And later on, after I’d looked at every mat and picture frame in the store, I made a bit of conversation with the lovely woman at the cash register, who looked at everything I was purchasing and said, “It looks like you’re going to go home and have fun!” And she was right. I said, “I love coming here because it’s fun to see everything you have, it’s fun to pick out what I want, and then it’s fun to go home and use it!” She seemed pleased. And then I went home, and I rested a bit, and then I got to work framing some photos.

How did I feel? Was I tired? Was I overloaded? Probably. But it was okay anyway.

What’s come into focus for me is that my challenges, my tiredness, my loneliness, my sadness, my confusion, and my fear are nothing extraordinary. When I was measuring myself against an ever-elusive norm of “happiness,” I kept rebelling against all of my so-called “negative” feelings, waiting for them to just go away so that I could be happy. And now I’m happy, precisely because I don’t want them to go away. When they come, I accept them. I even embrace them from time to time, because everything I feel is human, and everything I feel is the lot of every person. And when they go, I accept whatever replaces them. As Nouwen writes so beautifully:

“Many people suffer because of the false supposition on which they have based their lives. That supposition is that there should be no fear or loneliness, no confusion or doubt. But these sufferings can only be dealt with creatively when they are understood as wounds integral to our human condition…No minister can save anyone. He can only offer himself as a guide to fearful people. Yet, paradoxically, it is precisely in this guidance that the first signs of hope become visible. This is so because a shared pain is no longer paralyzing but mobilizing, when understood as a way to liberation. When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope.” (93)

Somehow, his words have had this mobilizing effect on me. Hopefully, as autistic people, we can search for life together, in all its fullness, knowing that we each walk alone, and we all walk together.

© 2010 by Rachel Cohen-Rottenberg

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

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

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

That’s right. None.

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

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

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

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

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

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

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

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

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

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

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

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

I’m not sure I’m ready to rejoice.

© 2010 by Rachel Cohen-Rottenberg

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

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

1. I am invisible to the average person.

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

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

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

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

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

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

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

2. Most people think I’m strange.

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

Quack.

3. I cannot connect with most people.

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

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

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

It didn’t work.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

I’ve written in the past about feeling invisible when Bob and I run into people who talk to him and ignore me. I know that this experience is not unusual for people on the spectrum, even though I don’t completely comprehend it. I know, for example, that we put out unexpected social signals (of which we’re not consciously aware) and that neuro-typical people find them confusing. I’m also aware that sometimes, because we’re not modulating the conversation with signals that others recognize, we are perceived as being socially absent.

What I can’t comprehend is how people can be so rude. So we put out weird social signals—who cares? We’re still human beings. I don’t get how people can ignore someone who clearly wants to be part of the conversation. On a purely visceral level, it offends me to the core.

Every since I was a kid, I’ve understood the necessity of inclusiveness. Perhaps I perceived my difference early on and saw the potential for being left out. Or maybe I just couldn’t stand the idea of anyone being marginalized. But it’s not just me. I’ve watched my neuro-typical daughter understand the importance of inclusiveness the same way she understands the importance of eating and sleeping. It’s not that she befriends everyone she meets, but unless people are rude or obnoxious, she will find common ground and treat them fairly. It’s not just upbringing. It’s who she is.

Unfortunately, the world is made up of people who don’t seem to get it, so I’m going through another round of feeling invisible. It began when I actually read some of the emails that Bob has gotten about my autism. Bob had told me enough about them to send me into paroxysms of grief over the weekend, but when I actually saw them, I realized that they were even worse than I’d imagined. They nearly sent me through the roof—not simply because people seemed to be working under a whole host of misconceptions, but also because they were questioning our choices and commenting on our relationship.

It was clear that we had to re-draw the sacred circle around our marriage and let people know that they’d crossed a line. So, on Sunday, Bob wrote and emailed a letter to several family members, basically setting limits while explaining how autism really works and how it affects us. He explicitly said that I feel very alone, and he ended the letter with the following statement:

“I appreciate all of your concern for me, for how I’m doing. I really do.
But please know that my part is the easier one: I am not struggling to
make sense of the neurological reality of autism. Rachel has the hard
work here. She’s doing it, and she needs your compassion and support and
empathy. If it’s hard on me, and it is, please imagine how hard it must
be for her!”

By the next morning, I’d received a very sensitive and apologetic response from one of Bob’s family members, which was truly amazing. Since then, all the other responses have been directed to Bob. Apparently, my email address has joined me in the land of invisibility. How else am I to explain its absence from the To: line? I’m sure there is a completely rational explanation, but I’m autistic and don’t really understand the mysteries of the universe as others do.

Bob forwarded one of the responses to me, and before he could forward any others, I asked him to stop. I feel unbearably sad when people direct their responses to Bob and talk about me in the third person. It’s the equivalent of standing in the grocery store and having someone direct all of the conversation to Bob when I’m standing right next to him. I’m not sure what part of “she needs your compassion and support and empathy” wasn’t clear to people, but obviously, there’s still a disconnect.

I know that many autistic people are more sensitive than your average person. Slights that another person might not even perceive cut us to the core. It’s hard for me to understand that other people don’t feel things as acutely as I do, and so it’s difficult for me when people don’t respond in the ways I need them to. But I have to step away from these kinds of conversations. Bob and I have had them for years, about so many people. Given the way my soul cries out for understanding and empathy, I’m not sure quite how to protect myself against hoping, every time, that people will just get it, but I’ve got to face facts here. I must detach my energy from people who are well intentioned but essentially blind to how I feel.

Margot Nelles, founder of the Asperger’s Society of Ontario, describes the experience of Asperger’s in the following way:

“It’s like being dropped in the middle of rural China without a guidebook or a language book,
and you go from home to home and feel that somehow you have insulted everyone.”

I’ve felt all my life that somehow, despite all my best intentions, I’ve unintentionally insulted people on a regular basis. How else can I explain being left out of so many conversations? Is my difference an affront to people? Is it my honesty? Is it my need to be understood? Or is it simply my sensitivity to all things sensory and emotional that leads people to work around me rather than directly with me? I don’t know, and I suppose, at this point, that I don’t need to know. I just need to look at empirical reality and make some course corrections about where to put my attention, my hope, and my energy.

At moments like this one, my husband says, “You just have to accept the way that people are.” But I can’t accept it. I’ll never accept it, because I know how much better it could be. At the same time, though, in my own life, I have to stop hoping for things to be different. I must stop hoping that maybe this time, if Bob and I say just the right words, with just the right tone, at just the right moment, everything will change. I have to acknowledge the stark reality that as much as I struggle with the acute sensory sensitivities that come with autism, I suffer most from other people’s responses to me, and that I can’t do a thing about it except to place my attention elsewhere and move in a different direction.

© 2009 by Rachel Cohen-Rottenberg

I feel like my life just bottomed out.

I’m not sure how it started. It seems to have coincided with a letter that Bob wrote to his daughter. I won’t go into details on it. It was a good, honest letter that spoke with love to her about her ongoing resistance to our marriage and to the choices that Bob has made for his life. In the course of reading it, I found out some more wonderful things that my stepdaughter has to say about me these days: that my autism is  a “choice” I’m making, and that I’m using it to “hide.”

Like I don’t have enough self-esteem problems without hearing bullsh*t like that.

And then, there is the email my husband sent to all the people he was going to see in California. He got back a couple of supportive responses. Of course, because nothing can ever be easy, he also got a very judgmental response from a family member telling him that he’s dealing with the situation all wrong and that he’s disappointing people because of it.

I’ve been counseled not to listen to this kind of thing, but I really have to. I need to listen to how people are reacting because it’s hard on Bob, and he needs to be able to get support from me. The problem is that once I’m done listening and giving him support, I’ve got one more piece of fear and self-loathing to deal with. He knows it, and he tries to tell me that other people’s reactions aren’t about me. In my brain, I know it’s true, but my self-esteem meter ends up falling by several degrees every single time.

Ironically, what gets to me more than anything, is that none of this is about me. I wish it were. I wish it were personal, but it’s not. All of these responses, whether for good or for ill, are directed to Bob and not to me. The people who are supportive and the people who are disappointed are all asking Bob whether he’s taking care of himself in the face of my autism. I am glad that people care about him but, hey, excuse me everyone, I’m the one going through hell with the autism here. Why do these people think he had to cancel his trip? Anybody care to chime in and ask how I’m doing? I mean, people can be disappointed over whatever they want. Everyone gets to be human, and everyone gets their own feelings, but where’s the perspective here? I’m pretty goddamned disappointed with how disabled I am. Would anyone like to address this small fact? Didn’t think so.

The reason all this energy is directed to Bob and not to me is clear. He’s writing to his friends and his family. They aren’t my friends or my family. I have no family, and I still haven’t figured out how to have friends—not really. I have people who consider themselves my friends, but I still don’t know how to be with them and make space for myself. I feel like I’m always tagging along behind them. I haven’t the merest clue about how to talk to another human being, besides Bob, and not go into overload. How can I possibly connect with anyone face-to-face when my mind can’t keep up with the words coming in and can’t figure out how to come up with words in response? This is high-functioning autism? Why, because I only freak out in the privacy of my own home? I feel like I might as well stop talking altogether, wear my ear protection, and check out of anything that looks familiar to me, because everything familiar is just one more reminder of how completely screwed I am.

Last night, all of these feelings flooded over into waves of grief so intense that I could barely move. I was crying inconsolably for hours. Then, I woke up this morning and cried some more.  I’m crying because it feels like God has played one giant series of very cruel jokes on me—that is, in those moments when I believe in God at all. Right now, I hate God with a passion. How could God have put me in this ridiculous body with this ridiculous neurology, put me into a family that abused and rejected me, given me gifts I can’t possibly use, given me a heart that I can’t put into action, and made me this silly little girl who just wants to love people and be loved in return and have everything be okay? Why is it never okay? Why did God give me so much hope when I was a girl? Why? Just to take it all away?

When I married Bob, all I really wanted was to have our little family—my kid and his kids. But now, his stepdaughter has nothing to do with me (despite all my attempts over the years to reach out and support her), his daughter absolutely hates me (despite all my attempts over the years to reach out and support her), and my daughter is so intimidated by Bob’s daughter that she hides in her room while she’s here. My daughter is anything but a fainting lily, so that’s really saying something. Bob’s son and I get along well, but because he lives in the house we used to live in, it’s very hard for me to go there and see him. Too many memories.

So much for my dream of a family.

As if all this weren’t enough, I realized last night that when my daughter goes to college, I won’t be able to visit her. She wants to go to school in California and traveling for me is impossible. So, I’ll see my daughter when she comes back to visit me, but I won’t get to see her life in action. Right now, I’m getting a taste of how it will be, because she’s been at camp for two weeks and she’s called me once. Even last year, she called me more, but this year, she’s too grown up for that. She’s having her life with her friends. I understand that. But it hurts. A lot.

Last night, when we sat down at our Shabbos table, I told Bob that I no longer want to chant any of the prayers we’ve chanted on Shabbos together since the day we met. I don’t believe in them anymore. I don’t believe in God anymore. The God who would play this many cruel jokes on me is no God at all. (And for anyone tempted to proselytize me right now, please don’t.)

While I was sitting at the table, I couldn’t even look at anything. Every single thing on the table seemed to mock me, because I remember buying it with optimism, with the hope of a happy life with friends, family, and community. Another joke. So I just sat there, unable to move. I told my husband I was sorry that I couldn’t chant the prayers anymore, and he said, “That’s all right. I’m going to light the candles tonight to honor our marriage and our commitment to each other. That’s what they symbolize tonight.” Of course, then I only cried more.

Ultimately, I just got tired out and ended up having some food before I fell asleep. I woke up in the middle of the night in a very weird mood. At first it was kind of nice, because it was emptied of everything. Then, I remembered my predicament, and the grief hit me again. Bob woke up and held me. He told me that it was okay to hate God, because it was better than hating myself, which is what I’ve been doing for as long as I can remember. He said that God can take it, but that I can’t. Maybe it’s true. I don’t know.

© 2009 by Rachel Cohen-Rottenberg

Dreams

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

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

                –Langston Hughes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

When I first got my Asperger’s diagnosis, I was so relieved. I was able to look back over the course of my life, from the distant past to recent events, and see the common thread linking everything. For awhile, it felt great. I love when things make sense, and the Asperger’s diagnosis made beautiful and astonishing sense.

Then, after a month or so, I got done walking on air and began feeling a lot of grief for the things I couldn’t change, for the person I couldn’t become, and for the end of believing that I could do anything I wanted to do. Since that time, I’ve been in a sort of holding pattern, and I’ve felt like I was doing okay. But now, I feel like the bottom is falling out.

On the outside, nothing has changed. I am physically healthy, my marriage is great, my kid is happy, I can write no matter how fried my head feels, and anyone looking in from the outside would probably assume that I’m doing just fine. The problem is, because I don’t go out much anymore, very few people can actually see me from the outside. I’m feeling an absolute aversion to going out into the world. Some days, I can take walks on quiet streets, so long as I’m a) wearing my Sonic Defender earplugs, b) wearing sunglasses, and c) keeping my eyes fixed on the ground whenever I see a person anywhere near me. I have to control what I look at and what I listen to, as much as I can. But most days, I don’t want to go anywhere.

One by one, I’m watching all the dreams I had for my life fall away. The funny thing is, I thought I’d already let go of so many. What could be left? I just had a few small dreams I was holding onto—going to the movies with my husband, having dinner out, getting dressed up and working at the store. Last year at this time, Bob and I went to the movies on Saturday nights, and I loved getting dressed up for work. I was even hoping to find a part-time job. But now, just a year later, even those small things are gone. I look at all the clothes that I bought last summer at the store, and I want to cry. They belong to an era in which I naively thought I’d be a strong, confident part of the world. That era seems very far away.

It seems like anything I want to do “out there” isn’t possible. Even the people from the school for autistic kids haven’t gotten back in touch with me, and it’s been over two weeks. Maybe they read my blog and decided they didn’t like me? Or maybe, I’m just supposed to let go of the world “out there” and stand face to face with the unmistakeably autistic person I am.

I have very little energy for NT emulation. I know how much it burns me out. I go into the world and put on my face, get overwhelmed and anxious, and come home unable to locate myself. Somewhere between being housebound and being in the world, there’s a huge rift and I fall in. Every time.

I love the natural world, and I love people, and I find the things that people do very interesting, and sometimes very beautiful. But it’s all overwhelming to my senses. When I go into the world, and I take in all the sense impressions and emotional energy, I end up feeling like I’ve been hit by a train.

It used to be that I was just afraid of people with bad energy, but I can see those types coming from a mile away. It’s not hard for me to spot them, and it’s not hard for me to walk away from them. It’s the really friendly people that give me the difficulty now. I want to be around them, I want to talk with them, and I want to be one of them, and yet, I simply can’t. I went to the thrift store with Bob last week, just to see how it felt. Everyone was so welcoming and so glad to see me, and I loved seeing them, too. But after a half hour of being in the store, I was disoriented and exhausted. It took me most of the next two days to recover.

Then, on Sunday, I had an emotional blow-out, and spent much of the day crying over feeling so isolated and alone. On Monday, Bob left for New York for a couple of days, and I was still crying. On Tuesday, I stayed in all day. By Wednesday, I was sitting at the breakfast table, handflapping and rocking. In the past, when I’d get overloaded, I’d have to think about what to do—lie under my weighted blankets, work out, sing, do some hard work. Now, I’m just stimming, early and often.

From the point of view of the autistic person I am, this kind of stimming is progress. In fact, I love it. It feels natural. It feels like some sort of ancient healing ritual. It feels like I’ve lived my whole life unable to speak my native language, and now I can.

But from the point of view of the highly accomplished and assertive person I used to be, it feels like I’ve been the hapless victim of a major fraud. How can I possibly have lived on this planet for 50 years without knowing that I’m autistic? I can see living here for one year, or two years, or even ten years without anybody noticing, but 50 years? How is it that even possible? Why did I have to burn out before the truth revealed itself? And now that I know, what’s going to become of me?

It’s really hitting me hard that there is no going back. I cannot fool myself into thinking that if I get dressed up, go out, and work at the store that somehow, I’m approaching the vicinity of the Land of Normal, where everything will be okay. When Bob is here, I do all right, because he’s easy to be with and he loves me. When my daughter is here, all the better, because I love seeing her and hearing the things she shares about her life. But when I’m alone, without either of them, my level of fear goes off the charts. I think, what if I were left completely alone? What if this were the next 20, or 30, or 40 years of my life? It’s not the food shopping and the driving that worries me. It’s the being alone. Forever.

I know that everyone has these kinds of fears. But neuro-typical people have many more opportunities to go out and get a break from the aloneness. I don’t have those opportunities. I can’t make plans and hope that they’ll work, because I keep trying to make ever more humble and sensible plans, and they still don’t work.

Right now, I am so totalled by all these realizations that Bob is coming very close to canceling his trip to California in August. My daughter will be at camp during the time that he would be away, and the idea of a week and a half at home alone feels impossible. I used to handle his extended trips by making plans with friends, but it didn’t really help. In fact, in some ways, I felt more isolated. I loved seeing my friends, but when I came home, I’d feel twice as alone as I had before. Even Bob’s short trips to New York are terribly difficult.

So I’m in a major crisis. It’s not a life-threatening crisis, but it’s a crisis nonetheless. I want Bob to stay here as much as possible. I don’t have a problem with his going to New York to see his dad, because his dad needs him and they need to be together. Even thought it’s difficult, I can support it. But I also need a lot of support for myself right now, and while I’m still trying to find ways to get the support outside of my house, I need Bob to be nearby. If his daughter wants to see him in August, perhaps she can come east and they can hang out in the house she grew up in. Bob feels like that might be a good solution. He’s not ready to make a final decision at the moment, but I think that’s where it’s going.

For my part, I’m starting to make some contact with a couple of local agencies that work with developmentally disabled people. It’s useless to pretend I have it all together when the whole damned facade is crumbling. I hope I can find some support locally and feel less alone in my everyday life.

You are all an amazing lifeline.

© 2009 by Rachel Cohen-Rottenberg

I started to hit a wall today while doing the Passover preparations.

My husband and I sat down on Sunday and made a list of everything we needed to do. (I know, a list! Aren’t you surprised?) We wrote down what I could do, what he could do, and what we could do together. It seemed like a pretty realistic list, and things have been getting done.

Today, I began to have trouble seeing how everything could possibly get done by tomorrow night. My husband’s basic approach is that we should do everything we can while enjoying the process. Whatever gets done is fine. It’s a good approach, except that I’m an Aspie, and I started perseverating on how I could possibly sweep and mop the floors and get all the Passover plates switched with the regular plates before tomorrow night. I started to get teary and agitated. All of my husband’s reassurances fell by the wayside. I felt like I was moving toward a meltdown. I haven’t had one since my diagnosis, and I really didn’t want to have one today.

So I decided to go to my volunteer job for a couple of hours, just to get out of the house, get some perspective, and have something of a routine in the midst of all the doings. I was glad I did. I got to work on some jewelry for two hours, which is like a zen meditation in a corner of the store. I wasn’t feeling great, but I got to focus on something other than the object of my worries, and that was good.

Afterward, I stayed around the store for a little while and began to realize how “other” I felt. I feel “other” pretty much all of the time. The AS diagnosis has only confirmed that I haven’t been hallucinating all these years. And then I realized why getting ready for Passover has been feeling so impossible.

Of course I can sweep and mop the floors. Of course I can switch the plates. It’s not about that. It was never about that.

It’s about having people to my house and feeling my otherness. It’s about knowing that I can’t possibly keep up with the conversation. It’s about knowing that I’m going to get overloaded. It’s about knowing that I can’t just show up in a group of people and have it be easy. For all the years that I’ve been having Passover seders, for all the years that I’ve been having gatherings of any kind, the feeling is always the same. The moment people arrive, my heart drops to the floor, because I feel so completely and ridiculously insufficient. The minute the doorbell rings, I’m about to fall behind the pack, and I feel it. I’ve always felt it.

It’s hard to think about being “other,” so I worry about the floors and the plates instead, as though they are amulets that will assure me a sense of belonging, a sense of being understood, a sense of being one of many.

My meltdowns stem, in part, from this feeling of otherness and from my fruitless attempts to erase it by working harder and harder, hoping that this time, if I work hard and get it “right,” everything will be okay and I won’t feel so alone. Of course, I work so hard and ignore my needs so completely that I get a migraine, or have a meltdown, or both.

Why are migraines and meltdowns preferable to feeling alone? Because feeling alone makes me want to cry. And why are stomping around and getting angry and having a meltdown preferable to crying? It’s the adrenalin rush. When I have a meltdown, I’m on a roll. I’m the most intelligent, the most insightful, and the most unfairly treated human being on the face of the earth, and I’ve got the adrenalin rush to prove it.

When I’m crying, none of that happens. I have to admit powerlessness and sadness and all that stuff. Who needs it? That’s much harder.

Every year at Passover, Jewish people don’t just tell the story of the exodus from Egypt. We relive it. The point is to liberate ourselves from the narrow places that constrict and enslave us. I feel like I’m in that narrow place of having done the same thing over and over, year after year, working harder and harder, trying desperately to be “normal,” all to no avail. Sometimes, it feels so easy to be this weird person who enjoys solitude, and it all feels okay. But there’s the flip side, where I stand apart and my solitude is transformed into loneliness, even in the midst of people who love me.

The only way out is to embrace the otherness, to fully accept it and to feel everything that comes with it. I hope I can start to do that.

It’s an incredible blessing to be able to write about all these feelings and know that at least one other person out there will understand. One other person is infinitely more than none. It makes the otherness all right, because we share it. Perhaps that’s the way out, to know that we are other, to know that we are alone, and to know that we are together in that experience.

May everyone be renewed in this season of renewal, whatever path you walk.

© 2009 by Rachel Cohen-Rottenberg

Every now and then, my husband goes down to New York City for a few days to visit his father. I used to go with him, but being in the city became too disorienting and exhausting. I crave the familiarity of my home and my daily tasks, so I’ve stopped going on these trips. My husband tends to travel when my daughter is with her father for the week, so I am on my own for a few days.

Whenever my husband goes away, I get very anxious. For years, I used to melt into tears every time, like I’d never see him again. I’ve always had a lot of separation anxiety, throughout my life. Any kind of leave taking brings it up. When I was about 12 years old, I went on a weekend retreat and was homesick the entire time—which was especially odd, because home was not a great place. About twenty years ago, I moved across the hall at work from one office to another, and I got all choked up when I was taking my pictures off the wall. The fact that they would soon be on another wall about 50 feet away didn’t seem to matter. Any kind of change like that makes me sad.

Although I no longer get teary when my husband goes away for these visits, my ability to self-modulate pretty much goes out the window. At first, I think about how nice it will be to have some time alone after work. So I go to work and have my afternoon, and then I come home to an empty house. I’m so used to my husband being there that a chill comes over me when he’s not. The minute I close the door behind me, it’s as though I’m the only human being left in the world. It’s such a lonely feeling. I barely know what to do. I’ll eat something, check my email, maybe watch TV, but I’m on edge. I get more and more tense and wired, and I can’t fall asleep till the early morning hours.

The problem seems to be that I don’t carry anyone around with me in my mind. I don’t think that tomorrow, I’ll see a friend and tell her about the knitting I’m doing. I don’t look forward to what I’ll do, who I’ll see, what I’ll say, or what kind of experiences I might have. In my mind’s eye, I don’t see myself “spontaneously sharing” anything with anyone. I feel very cut off from the world.

When my husband is here, I feel so normal. He is the first person I’ve ever felt truly at home with. It’s as though I’d been in exile all my life, and when I met him, I finally came home—to everything. So when he goes, I feel like I’m in exile again.

I don’t like how vulnerable I feel. I don’t like needing anyone this much, and I don’t like knowing that someday, one of us will be gone and the other will be left alone. I feel so connected to him in a world that feels so strange to me.

I realize that loss comes to everyone. I wonder, though, whether we Aspies feel the possibility of loss more intensely than other people because a) we don’t like going out into the world to socialize and b) we feel like such oddballs most of the time anyway.

For me, being left alone for a short time resonates with the possibility of being utterly alone, always. And then, when my husband comes home, I can’t possibly imagine life being any other way.

Do others feel as I do?

© 2009 by Rachel Cohen-Rottenberg