Journeys with Autism

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

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

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

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

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

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

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

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

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

How proud they must be.

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

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

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

Does it make a dent? No.

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

I’ve been going through an especially hard time lately. I’ve been feeling very dispirited, sad, angry, abandoned, and lost. I have days in which I cry virtually all day long. And then, I have days like today, in which I feel more grounded and more focused. Perhaps it’s simply that I got a full night’s sleep last night—the first full night’s sleep I’ve gotten in months. For the past few months, I’ve been waking up at 3:45 am, and then I have trouble falling asleep again. It doesn’t matter what time I go to bed; I wake up at the same time. If I manage to fall asleep again, I have disturbing dreams that are so vivid that I don’t even realize I’m dreaming until I wake up.

A friend of mine asked whether I’m having an extended meltdown—an interesting question. I don’t think I’m having a meltdown, at least not in the usual sense. If what is happening to me is a meltdown, it’s the combined result of all the years of driving myself, all the years of finding no kindness or understanding, all the years of trying so desperately to be what I cannot be, all the years of hating myself for not being what I cannot be. If I’m having a meltdown, it’s the result of all the stressors I’ve battled against throughout my life.

But really, what I’m going through feels more like extended grieving. And perhaps that’s all a meltdown really is: an explosion of grief over the pain of overload, the pain of being alone, the pain of being invisible, the pain of living in a world that is hard to bear.

There are many layers to this kind of grief, and the one I’m focusing on now is the grief of realizing that being autistic means being a member of a hugely misunderstood and maligned minority. I used to think I’d already traversed that territory by virtue of being a Jew, but the experience I’m having now is quite different from anything I’ve encountered in the past. True, I have experienced anti-Semitism, up close and personal, and I’ve met more than my fair share of people who think that they understand Jews because they’ve read the Bible or had a Jewish friend once. I still see plenty of anti-Semitism out there in the world, but for the most part, it doesn’t feel personal. Most people who know I’m Jewish don’t see me as a caricature. They don’t rely on stereotypes when thinking about me. Until recently, I lived my life as a very visible Jew—first wearing a kippah and tzitzis everywhere I went, and then later, wearing a headscarf and long skirts. If someone were going to engage in anti-Semitic craziness, I would have known about it by now. It just hasn’t happened. 

The experience of being autistic feels very different. Now that my autism diagnosis is on the table, and I’m making changes to integrate it into the life of my family, I feel like a walking stereotype. People in Bob’s family who have known me for years say things that are completely at odds with their experience of me—that is, when they’re not ignoring me altogether. All that has changed is that I have a diagnosis of autism. That’s all. When people got upset about Bob cancelling his trip, he got responses like the following:

• Does Rachel have as much empathy for you as you have for her?
• Often, it’s the caretaker who suffers more than the patient.
• You should put Rachel first, but not at the exclusion of your own children.
• If Rachel could do everything on her own before, why can’t she now?

If instead of receiving an Asperger’s diagnosis last November, I’d had a stroke and needed to relearn everything—how to go grocery shopping, how to be out in the world without becoming disoriented, how to speak without exhausting myself, how to reconstruct my self-image, how to reconfigure my life so that it works—I sincerely doubt that anyone would have questioned my ability to empathize, accused me of taking up too much of my husband’s time, or challenged me about whether I had actually lost the ability to do simple tasks. In fact, people would have been asking about how they could help.

However, I have a diagnosis of autism, and that makes me suspect. It means that instead of writing and offering supportive words, my relatives pull back and offer almost no direct support. Apart from the email I received from one of Bob’s cousins, the great shining exception to this pattern is my 93-year-old father-in-law. He is very interested in what I write on my blog and talks to me on the phone with great appreciation and affection. Perhaps it’s because we share so much in common. We were once both very high-functioning people out there in the world, seemingly in control of things, and making a Great Success Of It All. Now, he is very frail and can’t possibly do what he was able to do even five years ago. He has had to find new ways to see himself and to enjoy the world. Despite differences in age and neurology, we are going through parallel experiences, and somehow, we’ve been able to extend ourselves to each other.

Within the family, though, he is the exception. When I consider the range of responses I’ve gotten, from silence to anger to suspicion, I find myself realizing that I have now joined the ranks of the invisible, the misunderstood, the maligned, and the burdensome. This time, it’s personal. This time, it’s in the family. This time, despite the fact that I used to ride up front, I’ve been told to go to the back of the bus and stay there. What else does it mean when someone considers me a patient rather than a wife? What else does it mean when, instead of showing compassion for what I’ve lost, someone accuses me of choosing to become disabled? What else does it mean when people direct their words to Bob and not to me, as though talking to me is suddenly an uncomfortable (and therefore impossible) task? It all signals an unwillingness to encounter me as I really am and to show me the respect due to any human being. It means that I have second-class status. It means that I am expected to justify myself at every turn, to reassure people that I will not make them uncomfortable, and to let them know how sorry I am for what a burden I have placed on their shoulders.

Of course, I categorically reject all of this nonsense. I will not sit in the back of the bus, and if anyone expects me to, I will not negotiate. I will not justify myself. I will not explain myself. I will not apologize for myself. I will just get off the bus and walk, in my own direction, and at my own pace. Is it lonely? Hell, yes. But, as Frederick Douglass wrote:

I prefer to be true to myself, even at the hazard of incurring the ridicule of others, rather than to be false, and to incur my own abhorrence. 

© 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

I’ve always considered myself very peculiar in the ways that I deal with grief and loss. For the longest time, I couldn’t understand why some losses reduced me to tears immediately, while other losses left me nearly empty of feeling for years. Being diagnosed with Asperger’s has helped me to put my grief into a new framework. In this post, I’ll talk about some of the losses I’ve gone through, the ways I’ve handled them in the past, and the new understanding I am reaching about why I respond in the ways I do.

The Loss of My Grandparents
I was very close to my maternal grandparents, and over the course of my childhood, I saw them often. My grandfather had been a classical violinist, and he was very supportive of my being a musician. Along with my grandmother, he came to all of my recitals, and he loved to listen to me play the piano at home—except, of course, when I didn’t play well. Then, he would say things like “Mozart is turning over in his grave!” or “Stop banging on the keys!” I never felt at all irritated or intimidated by these comments. He was treating me like a peer, and I appreciated it.

In 1971, he was diagnosed with cancer and had an operation to remove a tumor the size of a tennis ball from one of his kidneys. He never really bounced back entirely, but he had a couple of very good years before the cancer re-appeared. By the end, the cancer had spread to his lungs and to his brain, and I was afraid to go and see him.

The night before he died, I finally visited him in the hospital. His condition was worse than anything I had imagined. His body was absolutely ravaged, and if I hadn’t known he was my grandfather, I might not have recognized him. When he saw me, he just cried and kept repeating that he wanted to die.

He passed away the next afternoon. I knew then, as I know now, that he was waiting to see me, and that he didn’t want to leave until he did.

My grandmother died a year and a half later, two days before my seventeenth birthday. She had been a generous, loving woman who had never spoken an unkind word to me. She used to come to our house on a regular basis with loaves of cinnamon-raisin bread, because she knew that we loved it. When I stayed at her house, she’d make me French toast with powdered sugar in the morning, and then she’d proceed to feed me every few hours, just to make sure I wasn’t going hungry.

One afternoon, she mopped her kitchen floor, lay down in her bed for a nap, and never woke up.

I didn’t cry for either of my grandparents when they died. I’m not sure that I even felt sad. I was trying desperately to locate my feelings, and I just couldn’t. At the time, I thought that something was very wrong with me. We had the funerals, we sat shiva, my mother was nearly inconsolable, and I felt like a ghost. When a friend at school offered her condolences, I realized that I ought to be feeling something, but I couldn’t figure out what it was.

It took me thirty years to cry for my grandparents. I was at a spiritual retreat, where we’d been asked to bring something of importance to us. I’d brought my grandmother’s brooch, which was the only possession of hers that I’d been given. During a healing ritual at the retreat, the floodgates opened, and I cried like I would never stop. It was both excruciating and cathartic, and I’m grateful that it happened.

A Friend’s Unexpected Death
In the middle of these two losses, a very brilliant and loving friend of mine committed suicide. In January of 1975, he took cyanide at the water fountain on the third floor of our high school. About a week later, the doctors took him off life support. He was 16.

At the time, all the adults said that his death was accidental—that he’d brought sugar to school to keep himself going, that he’d carried the cyanide with him for a science experiment, and that he’d gotten the two packets mixed up by mistake. I tried with all my heart to believe this story, but I never really did. Twenty years later, when I asked an old high school classmate whether she thought he had committed suicide, she said, “Yes, of course. I never believed that ridiculous story.”

That’s when I realized that I never had either. I’d always known. And I’d always felt incredibly guilty about his death. For one thing, in some part of my soul that I kept well hidden, I knew that my friend loved me. He’d walk over to my house late at night, just to see whether the light was still on in my room. He lived a good distance away, so I should have understood what was going on. But I was a silly teenager, giggling and dreaming about the boys that everyone thought were so cute, and I just didn’t want to deal with his feelings.

And then, there was the fact that the day before he took the poison, he’d wanted to talk with me. That nearly wrecked me. I remember the day very well, because there was an awful blizzard. Someone had offered me a ride home, which I very much wanted, because I hated having to wait for the bus in the freezing cold. As I was gathering my books together, someone else told me that my friend was on the fourth floor and really wanted to talk to me. I was so focused on getting the ride home, and so innocent of the possibility of what was about to happen, that I said, “I can’t right now. I’m getting a ride home. Tell him that I promise we can talk tomorrow.”

But there wasn’t any tomorrow. 

There were hundreds of people at his funeral, and I cried my eyes out from start to finish. I just sat there, all hunched over, with my hands over my face, crying so hard that when I raised my head up for a brief moment, everything was a blur. After the funeral, as we walked outside, the sunlight reflecting off the snow felt like it was burning my eyes.

And then, a mutual friend had the gall to say, “Well, at least he’s in a better place now.” If I hadn’t been so exhausted, I’d have unleashed a torrent of outrage and grief at him. As it was, I just thought, “How the hell can anyone say that? How the hell can life just go on without him?”

The next day, I sat in our history class, the tears running down my face, while our teacher continued the lesson plan without so much as a word about the empty desk where my friend used to sit.

The Break from My Original Family
As I’ve discussed in a previous post, I broke off contact with my parents in 1991, when I was 33. In return, the rest of my family broke contact with me.

In 2001, I decided to sit shiva for my parents, my brother, and my extended family. They were still alive, but my relationship with them was gone, and I needed a ritual to help me grieve them. So, I took out my favorite photographs of each of them, and made little yizkor books—photo albums of remembrance. Then, each day, a different friend came over. We shared the photos, talked, and took a long walk together.

I had assumed that my grief over my parents would hit me like a tsunami, but it never did. My grief at losing my brother, however, was unutterably painful. We’d been best friends when we were kids. I missed our childhood. I missed the children we once were. I cried, and cried, and cried.

As painful as it was, it was very good for me. I was finally able to take out some childhood photos of us and put them up where I could see them.

My Parents’ Deaths
Each year on my birthday, I would be haunted by the specter of my parents. I did not know whether they were alive or dead, and it was becoming increasingly difficult to wonder. In 2005, around the time of my birthday, my daughter urged me to start looking for answers, and my husband concurred. I still wasn’t ready. But then, every night, for two weeks, I had terrible nightmares. I dreamt that I was in a tight, dark space with no air, no way to see anything, and no ability to move. Every morning, I woke up screaming. At the end of the two weeks, I woke up calling for my mother.

At that point, my husband said, “You need to find out what’s going on. Now.” So, I did an online search in the Social Security Death Index, and I learned that my mother had died in June of 2004. I want to say that I dissolved in tears, and that there was much guilt, and regret, and gnashing of teeth, but all I could feel was relief. For the first time in my life, I felt safe. That was it.

My father died in February of 2008, and I found out about his death in much the same way. In his case, I also felt relief—for both of us. I had had very brief contact with an uncle who told me that my father was dying of emphysema. I was not surprised by this news, since he’d been a heavy smoker almost all of his life, but the thought of him suffocating to death was awful. When I learned that he had died, I was relieved that his ordeal was over.

Reflections on Why I Grieve the Way I Do
Sometimes, my expressions of grief happen right away; at other times, they are very, very delayed. I’m not sure exactly how to account for these kinds of variations, but they seem to have a lot to do with the sensory component of being an Aspie.

Like most (all?) Aspies, I do a lot of sensory work every day, and it’s very hard for me to switch gears quickly from one kind of experience into another. Normal transitions are slow and difficult; why should the huge ones be any different, especially when they are emotionally overwhelming? As a diagnosed Aspie adult, living in a calm and loving household, I can make the transitions more quickly. I cry much more easily now than I ever have. But as a child with undiagnosed Asperger’s, I was just trying to keep body and soul together, and it was a full-time job.

When my grandparents died, I was living in a state of unabated sensory overload. My parents were both very overwhelming to my senses, and I was in a state of constant fear. In the midst of all this chaos, my grandparents were everything to me. If it hadn’t been for their unconditional love, I don’t know whether I’d have survived. So I couldn’t feel the loss when it happened. It would have been too devastating. I just kept putting one foot in front of the other until high school was over, and I dreamed of the day I could get as far away from my childhood as possible. 

But I’ve never been able to outrun the sensory sensitivities. Because I experience the world very intensely, I’ve felt very apart from others my whole life. Because of this feeling, I’ve experienced life as a fairly regular series of losses, and sometimes, I just can’t handle another one. Every time that I realize that I’m not like others, that I don’t expect what others expect, that I can’t relate in the way others relate, that I can’t belong in the way others belong, my heart hurts, and I feel the loss. Every time. Like drops of water wearing away a stone, those small moments wear away at my heart. It’s been going on my whole life, whether I’ve perceived it or not, whether I’ve expressed it or not, and whether I’ve denied it or not.

And to make matters worse, I still read articles in which people express the mistaken assumption that people on the spectrum are devoid of feeling. Why do they judge our actions and feelings in the light of their own experiences? Why don’t they listen to how our apartness makes us feel? Why don’t they understand that the world comes rushing in at us, too loudly, too brightly, too quickly, and with more emotion than we can bear? Why don’t more people listen when we say that we have to find some way to get outside of the overload, to order it, to stand apart from it, just to be able to make sense of it at all?

As one of my email correspondents said, it’s because people have difficulty understanding and accepting difference. And I know they do. I just can’t understand why.

But I take great comfort in the words of Rabbi Menachem Mendel Morgensztern of Kotzk, who said, “The only whole heart is a broken one.” While others may refer to our neurology as a “disorder” from which we “suffer,” I know that our hearts and our minds are whole because of our life experiences, not despite them. It may take some time, but little by little, the rest of the world will know it, too.

© 2009 by Rachel Cohen-Rottenberg

I’ve been doing a lot of grieving lately. I’ve been missing my daughter’s childhood terribly. I’m not sure whether I’m missing the child she once was, or the person I once was, or both. I’m not sure there’s a whole lot of difference. Motherhood changed me from who I was before.

From the time I was in my early 20s, I knew that I wanted to be a mom. I didn’t have Ashlynne until I was 34, and then I fell in love with the whole thing. It wasn’t difficult. She was an amazingly easy baby. She even woke up giggling every morning. I kid you not. Giggling.

When I was on maternity leave, we’d go out to the park whenever the sun was out, and then she’d take a nap. Her dad would call from work to see how things were going. I’d tell him that Ashlynne was napping and that I was really exhausted. He’d ask me why I wasn’t catching up on sleep. I’d say, “I can’t. I’m just sitting here, watching her. She’s so incredibly beautiful that I can’t take my eyes off her.”

It seemed as though it would last forever. Of course, people warned me. “Enjoy it now,” they’d say, “because the time just flies by.” Rest assured that while I politely thanked them for their wisdom, I was smugly thinking, “They’re just regretting the fact that they didn’t pay attention to their children. My daughter’s childhood will not fly by. I will be paying attention.”

And I was paying attention. I was doing crafts and letting her use face paint on her tummy. I was homeschooling her, encouraging her creativity and her independence of mind. I was working at home as a writer so that she could see me whenever she wanted. I took pictures of just about everything she did. I kept journals. I kept every piece of artwork. I was determined to be there for every moment I could. And it just kept going and going and going and going.

But now, suddenly, it’s almost over. She’s driving. My car. On the highway. The fact that she only has her learner’s permit, and that my husband is always in the car when she drives, does not detract from how old that makes me feel. And how strangely unnecessary.

Oh, yes, I know. I’m still necessary. I’m her mom. I help her with her problems (the ones she tells me about). I listen. I empathize. I give good advice. I let her drive my car. (Did I mention that?) I read the awesome creative writing she does, and I look at the amazing photographs she takes. I give her money for the movies. I used to ask her whether she needed help with her homework, but I quit doing that last year. She told me that she was grown-up enough to take care of it herself. And she takes care of it just fine.

When did it all begin to wind down? The first indicator I had was the day last year that she said to me, “Mom, there are things about my life you do not know.” Once I got over the shock, I said, “Yes, you’re a teenager, and you deserve some privacy.” I even believed it.

Does that make me a good mom? Yes, it does. Give me an award and I’ll frame it.

But it won’t stop time.

And now, my daughter has crossed over from childhood to young adulthood. My friend Sue saw her a few weeks ago, and she cried when she saw what a beautiful young woman she’s become. When Sue and I first met, our daughters were 9. Now they’re 16. How is that possible?

I don’t know what to do with myself. I mean, I do lots of things. I blog. I do my community service work. I keep the house together. I knit. I do my art. I’ve relearned Torah cantillation. I see my OT. Now that the spring is here, I’m gardening, which I love. In fact, I spent much of yesterday digging and weeding and transplanting.

But everything is different now. Everything I did before was in the service of being Ashlynne’s mother. It gave me a focus—spiritually, emotionally, physically, and intellectually. When Ashlynne was born, I thought, “When she’s 18, I’ll be 52. That’s a long time away. I’ll be old by then.” Now I’m almost 51. No more babies. No more intensive child-raising. No going back. Only forward. But to where?

I can’t work anymore. There is no new career. For most of my life, I powered through my sensory overload, anxiety, and general Aspie confusion with all the willpower and tenacity at my disposal. I worked full-time, homeschooled, and did enough honest labor for three or four people. My last manager used to joke that when I had the flu, I worked at normal human speed.

I worked from the time I was 17 until I was 47. And now, I can’t work anymore. I lived in defiance of my neurology for 50 years. I can’t do it anymore. My husband says I’m like the Road Runner in the cartoon. Everything was fine, even when he ran himself right off a cliff. Even then, he could still run in mid-air. Until he looked down.

When I discovered my Asperger’s, I looked down. It’s a good thing I did. But now, all of a sudden, I’m an Aspie with a young woman for a daughter. How did that happen?

These days, I seem to vacillate between hope and grief. Yesterday, I was sitting on my front porch, and the little girl who lives across the street came over. Because our family is new to the neighborhood, we’re just getting to know our neighbors. She introduced herself and told me she was eight years old. We talked a little, and then she skipped down the street with her dog. It was a wonderful, reassuring moment. There are still little kids around. They’ll come over and talk a bit. I’m still in the flow of life.

And then I realized that half of Ashlynne’s life ago, she was eight, skipping down the street like that little girl. I got really teary, just as I am right now.

I’m certain this grieving is all very normal. Our kids are only on loan to us, so the grieving is inevitable.

Is it worth it? Yes, even with the grieving, it’s worth it. All of it.

© 2009 by Rachel Cohen-Rottenberg

I’ve noticed in the past week that I don’t have a lot of energy for relating to people outside my family. It may simply be that it’s January in New England and my energy is low, but this lassitude seems related to having Asperger’s Syndrome, so I thought I’d share my feelings.

Now that I have a diagnosis, I am hyper-aware of what an effort it takes for me to enter into an exchange with another person. I feel myself pulling energy up from deep inside. I’ve been working hard at communication all my life, but now I notice how much it takes out of me. A part of me is saying, “Don’t bother trying to connect. Just settle in, hibernate, and keep conversation to a minimum.” This feeling is in very sharp contrast to how I usually feel about going to my volunteer work and running errands. I usually look forward to being around people. I have a lot of good energy to give and I generally enjoy sharing it.

So why do I feel this way right now?

For one thing, I’m conscious of the cost. I know that when I get home, my mind and body will be very tired.

For another, I’m conscious of my blindness to nonverbal communication, and this blindness saddens me. The people I work with at the store are wonderful. They’re interesting, funny, kind, non-conformist, and welcoming. I can see those qualities quite clearly, but I’m aware of how much I can’t see. I’m aware of how much is being communicated by body language and facial expression that I’m missing. I wish I could connect in the same way.

But instead, I have only words. I have plenty of them, and I used to think that was enough. It doesn’t feel that way right now. Right now, I feel very limited.

Last week, I said to my husband that I’m enjoying people much more these days because I don’t expect them to be my friends. I know it sounds cynical, but I don’t feel cynical about it. In fact, I feel a kind of detachment and acceptance that I’ve been searching for all my life. I have my close friends, and as I look back, these friends weren’t people I sought out. I just happened upon them, and we clicked. So if I happen upon another friend, all well and good, but it’s easier on everyone if I don’t expect it. That way, people don’t disappoint me, and I don’t resent them. It’s good to be moving on from that paradigm.

So, when I’m feeling good, I’m very happy letting people be themselves and enjoying them for who they are. When I’m feeling low, I feel very insufficient. At the moment, I wish I had a blind man’s cane when I enter the social world so that people would know that I can’t see what’s right in front of me. The fact that this disability is invisible is very difficult.

But being a practical person, I must have a plan. So tonight, I sent an email to an AS-literate therapist, asking whether she knows any therapists in my area who could provide emotional support. I’ve learned that my last therapist, who does not know very much about AS, would not be helpful about the issues I’m facing. I miss having someone to go to for support and guidance, so it’s time to set out and find a good counselor.

I’m also going to contact an occupational therapist about an hour from my home. I need to get a sensory assessment and begin some sensory integration work. Because of the winter storms, I’ve been putting it off, but I need to make the appointment and hope for decent weather.

And I must remember: we are in the dead of winter here in New England. I will feel much better when I can see the earth under my feet.

© 2009 by Rachel Cohen-Rottenberg