Archive for Childhood

Reflections on Grief and Loss: One Aspie’s Story

May 31, 2009 Rachel Childhood, Empathy, Girls and AS, Grieving, Sensory Processing Disorder (SPD), Sensory Processing Issues

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

17 comments

So I’m Not the Only One…Really?

May 11, 2009 Rachel Childhood, Communication, Gravitational Insecurity, Monologues, Occupational Therapy

Every time I think I’m the only one who has ever said, thought, done, or experienced something odd, I find another Aspie who describes the experience precisely. In the past few weeks, a couple of commenters to this blog have described things that I’d never thought another living soul had ever experienced. I’ll share their comments, in the hopes that others might discover that they are not the only ones, either.

1. In her response to my Like a Deer Caught in the Headlights post, Soph wrote about the experience of being talked at and overwhelmed:

“On one recent occasion I literally did feel as if my brains had been scooped out and this person’s thoughts were all I had in my head. It actually was like brainwashing.”

I couldn’t believe it. She had described exactly how I felt every time I talked to my mother. My mother was quite a relentless talker, and she would talk over, under, around, and through me. It left me feeling like an empty shell holding only her thoughts and feelings. It took many years of recovery and empowerment work to be able to hear my own inner voice.

Even now, I find that when I’m around people who are relentless talkers, who won’t let me get a word in edgewise, or who won’t respond directly to anything I’ve said, I feel just plain lost. It’s like I just go away. Even though I may seem like I’m doing okay, my brain and all my senses are on total and complete overload.

Last week, I had another experience with someone talking at me. I am happy to report that this time, I just got up and walked away. Just like that! I finally realized that I had a very simple choice: I could protect the other person’s feelings, or I could protect my own very sensitive neurological system. I chose wisely.

2. In her response to my post about my second OT visit, Linda wrote about having a sensation of falling when going to sleep at night:

“I sucked two fingers at night until I was fourteen because the stimulation helped balance my system so that I didn’t have strange floating, falling and tipping sensations.”

This comment really knocked me out. As an adult, I have sometimes had the sensation of falling down when I’m falling asleep. I’ll be drifting off to sleep, and then I feel as though I’ve slipped backwards going down a stair or walking off a curb. It feels as though my legs have gone out from under me. I feel weightless, and then, I feel like I’ve hit the ground. I always wake up very startled by this sensation, and I nearly always let out a shout.

I’ve always wondered what this experience is about. I emailed my OT about it, and she said that she had heard similar stories. She didn’t have an immediate answer as to why I would have this experience, but she said she’d ponder some possible explanations. I’m wondering whether it has something to do with my gravitational insecurity. I have an appointment this week, and I’m looking forward to hearing what she has to say.

If you feel so inclined, let me know whether you’ve had experiences similar to the ones I’ve described. It’s been a very great relief to me to know that I’m not the only one.

© 2009 by Rachel Cohen-Rottenberg

12 comments

Seeing My Life from a Sensory Perspective

April 26, 2009 Rachel Childhood, Eye Contact, Perseveration, Sensory Processing Disorder (SPD), Sensory Processing Issues

[Note 1: This post includes some general information about the abuse I experienced as a child. The descriptions aren't graphic, but if you're not feeling up to reading about the subject, feel free to skip this post.]

[Note 2: I spell the word God like this: G-d. It represents my belief that G-d is beyond all words and images, beyond any name I could employ to represent the unfathomable mystery of existence. It works for me, but I don't mean to suggest that it should work for you. I have enough on my hands without telling other people what to believe!]

And now, my post:

In the process of realizing that many of my challenges are neurological, rather than psychological, I’ve begun reassessing key relationships from earlier times in my life. A great deal comes into focus. I can make sense of things that had previously been entirely baffling. Most of the issues revolve around my very painful relationship with my parents and extended family, so these are the issues I will share in this post.

My Relationship with My Father
My father was most likely an Aspie. He was abusive, but in a very odd kind of way. He lacked meanness and guile. I never felt that he was a bad person. He just didn’t understand boundaries or what kind of behavior was appropriate. He seemed very lost. I knew he was on overload a lot, even though I didn’t have the words for it. He had many other Asperger traits: he couldn’t make eye contact, he thrived on non-sequiturs, he loved detail, he couldn’t hear me in situations involving more than two people, and he constantly interrupted and changed the subject of any conversation.

Regarding the abuse, I don’t excuse his behavior, but I see why it always had this weird quality of cluelessness rather than malice. It never seemed textbook, and until I discovered AS, I was mystified as to why. I kept waiting to meet someone with a story similar to mine, but despite going to a number of survivor support groups over the years, I never found anyone who did.

My Relationship with My Mother
Oy. My mother was always certain that she was right and knew the proper way to do things. And everything—everything—was always about her. For instance, if I were sick, she wouldn’t say, “Oh, I’m sorry you don’t feel well.” Instead, she’d say, “Goddamit, I had plans today.”

Needless to say, she dominated both my father and me. My next-door neighbor from childhood described my parents in this way: “Your father is a puppet, and your mother is the puppeteer.” I immediately had an image of my mother in the second-story window manipulating the puppet strings while my father watered the lawn. It was the perfect image to describe their relationship. As a result, she was able to dominate me almost entirely. It was like living with a tornado.

It may have been common for Aspies in my parents’ generation to marry a dominating partner. I can see why an undiagnosed Aspie might want to marry someone who is absolutely sure she is right, at all times and in all places. It didn’t go very well for me as a child, however.

My Relationship with My Extended Family
When I was 33, I cut off contact with my both of my parents. I wasn’t able to assert my boundaries and be taken seriously, so I continued to feel very unsafe, even in adulthood. After every conversation with my mother (even from 3000 miles away), I fell into very deep depressions in which I didn’t think that I deserved to live. In response to my breaking contact with my parents, the rest of my extended family broke contact with me, including my brother (and only sibling). I have tried to reestablish contact with several family members, but my attempts have been rejected.

Taking a Sensory Perspective
You can see why I approached these issues from a psychological perspective for many years. Working on my healing in conventional psychotherapy did me a world of good.

But the picture never seemed complete until I brought in my Aspie sensory issues. For example, I went to support groups with women who had undergone similar kinds of abuse, and they didn’t present the way I did. To be sure, they suffered from depression, and anger, and sadness, but they were able to cope with life much better than I did. I used to watch them relating to one another during and after the group, and they were able to connect in a way that I couldn’t. I just couldn’t keep up, and I could never understand it. I thought that the abuse had broken my ability to connect to other people. No matter how much work I did, I always felt apart from everyone, behind an invisible force field. Even in support groups, I felt overwhelmed and cut off.

Now, of course, I recognize all of these responses as Asperger traits. Clearly, the trauma didn’t help, but no amount of psychological healing can fix Asperger traits. It’s nice that I’ve finally stopped banging my head against that particular wall. Really nice.

However, the break from my parents has been a more difficult issue for me to resolve. Every year or so, I go through a “Should I have broken contact?” cycle, in which I talk to my husband or my therapist or myself about the whole situation, and why I broke contact, and whether I could have stayed in contact, and whether the first people I’m going to meet when I die will be my parents, and whether they’ll both obliterate me the moment I show up, and whether G-d will be giving them instructions on how to do so.

In response to my perseveration on this issue, my husband invariably says, “Rachel, there is nothing you could have done differently. We’ve been through it over and over. You could not have maintained contact and protected your sanity or saved your life. You know it, I know it, and G-d knows it.”

And the last time I went over this territory with a therapist, she said, “You know, we’ve really got to talk over this G-d of yours.” How could I explain that, as long as I’m not talking about my parents, my experience of G-d is one of unconditional and unending love? Only with my parents in the conversation does G-d become merciless.

These days, though, when I consider the breaking contact question, I don’t feel inclined to perseverate on it. Something has changed in me. I’m able to look at the situation from a sensory perspective, and a couple of things become very clear.

1. I hate my parents. There, I said it. I don’t hate them in the sense of wishing them harm. They have both passed away, and I hope they are with G-d and that they are healed. I would not want them to spend eternity in the same state of mind in which they lived on earth.

The feeling I have is more visceral: my senses are repelled by them. I can’t explain it any other way. When I look at pictures of them, I feel sick to my stomach. It’s my Aspie empath ability to take in the full picture of a person’s energy, while missing all the little nonverbal details. When I take in the full picture of my mother’s energy, I feel repelled by it. When I feel my dad’s energy, I feel exactly the same thing.

It goes beyond anything they did. It’s about who they were. I believe that my parents, like all people, were made of G-d’s light, and that their souls were pure. So I don’t think of them as evil. It’s just that who they were in this life, and who I am in this life, could not coexist happily, anywhere.

2. Given my jangly nervous system, my ability to go into immediate sensory overload, and my extreme difficulty in conversations consisting of more than two people, it’s amazing that my relationship with my parents lasted for 33 years. With my father’s constant interrupting, my mother’s ability to dominate every situation, and the fact that I couldn’t politely disagree with either of them, about anything, without a loud, verbal, angry, relentless cyclone of epic proportions coming at me from their general direction, I’m not sure how I managed to share space with them for five minutes, never mind 33 years.

I always feel that people will judge me harshly over this subject. I hope you won’t. I’ve done the best I can with what I’ve got. I wish things could have been different, but I know now, finally, that it simply wasn’t possible.

© 2009 by Rachel Cohen-Rottenberg

17 comments

Parenting, Grieving, and Letting Go

April 20, 2009 Rachel Childhood, Grieving, Parenting, Women and AS

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

6 comments

Sleep Resistance, Anyone?

April 12, 2009 Rachel Anxiety, Childhood, Food, Girls and AS, Sensory Processing Issues, Sleep

I’ve been reading lately about Asperger’s and sleep disorders. From what I can gather, the problems fall into two categories. Some Aspies can fall asleep without a lot of trouble, but wake up several times during the night. Other Aspies have great difficulty falling asleep, but few problems staying asleep. At any given time, an Aspie can have one difficulty or the other, or a combination of both.

My Life as an Insomniac
I’ve experienced both types of difficulties, but my biggest challenge has always been falling asleep. As a child, it took me 2-3 hours to fall asleep at night. I had all kinds of ways of passing the time. My favorite was to hide a small transistor radio under my pillow and listen to talk shows about baseball or hockey. I’d turn the volume down low so that my parents couldn’t hear. In the absence of a radio show, I’d create an elaborate fantasy in my mind about becoming the first female baseball player and pitching a perfect game in the World Series. (For details about this particular portion of my interior life, see my earlier post.)

Outside of baseball and hockey season, I’d run through all the songs from Mary Poppins or The Wizard of Oz in my mind. We had LPs of each, and I’d listened to them so many times that I could recreate them verbatim in my head. If I were still awake, I’d make up stories about being adopted by some all-American family, like The Brady Bunch. This particular pastime would generally put me to sleep.

In the midst of the radio shows, the musicals, and the hope for a TV family, there was a constant anxious undercurrent. The only way I can express it is to say that I was just plain afraid to fall asleep. Specifically, I was afraid to lose consciousness. As a child, I was sure it would hurt to drop from consciousness into sleep, rather like falling from a second-story window onto my head. I used to go around in circles, believing that the longer I stayed awake, the worse it would hurt to fall asleep. Of course, the fear would only increase the wakefulness, and the wakefulness would only increase the fear.

As an adolescent, the problem became worse. High school meant loads of homework, constant sensory overload, and an alarming increase in the dysfunctionality of my home environment. I’d routinely stay up studying until 3:00 or 4:00 in the morning. I don’t think I was really learning anything. I was just keeping myself awake by staring at print and taking notes. Of course, having to get up a few hours later for a 7:30 bus didn’t help my stress level at all. By the time I left home, I was already chronically and painfully insomniatic.

As a young adult, I struggled with this condition for the next ten years. Not only was I unable to fall asleep easily, but I also started waking up in the middle of the night and often had difficulty getting back to sleep. For a short time, I used over-the-counter sleep remedies, otherwise known as The Pills From Hell. They suppressed my REM sleep, so although I slept, I woke up the next morning stressed from not having dreamt. The stress created so much pain in my body that I continued taking the pills just to fall asleep, which led to a vicious cycle of increasing stress, increasing pain, and increasing insomnia. The cycle ended two weeks later, when I finally realized why my mother’s friends had gotten addicted to sedatives. Never sleeping ever again was better than the alternative, and thus my two-week foray into the land of sedative medication came to an abrupt and bitter end.

I continued to struggle until 1987, when I was a graduate student and went to UC Santa Cruz for a weeklong conference. After three terrible nights of not sleeping at all, I drove myself to the emergency room, signed myself in, and told the attending doctor that he had two choices: give me pills to help me sleep or hit me over the head with a hammer. He gave me the pills. They were tricyclic antidepressants called Amitryptiline, and he had used them himself when he’d come back from Viet Nam in a state of traumatized exhaustion. After taking the first one, he’d slept for two straight days.

That sounded good to me. So I took the first tablet at 8:00 that night, and the next thing I knew, it was 6:00 the next morning. I had fallen asleep easily, I had slept through the night, and for the first time in my life, I felt happy to wake up and start the day. My heart was open, the birds were singing, and I was connected with everyone and everything. I felt, for lack of a better word, normal. At least, a lot more normal. Okay, a little more normal, but in a major way: I understood why other people got out of bed and looked forward to the day.

Fast Forward to the Present: Fighting Sleep
I’ve taken the same medication for over twenty years, and I no longer suffer from chronic insomnia and its associated physical and mental pain. The medication I take is non-addictive and non-narcotic. It allows me to get gradually tired and sleepy, like a, um, normal person. That’s the good news.

The bad news is that I now resist that effect of the medication. I resist going to sleep. Some people have a very good nighttime ritual, with a routine bedtime and everything. Some people can’t wait to get under the covers. Not me.

I’m okay until about 10:00 at night. I’ve generally had a good day. I’ve worked out, eaten healthy food, drunk plenty of water, spent time with my family, gone out to work, and immersed myself in writing or singing or art work. I’ve taken very good care of myself. Then 10:00 pm comes, and I stumble off the path. Consciously and willfully.

It starts with turning on the TV and watching some detective show, like Law and Order or CSI:NY. While I’m watching the show, I start getting hungry. At least, that’s what I tell myself. But I’m not really hungry. It’s more like my head saying, “Enough with the healthy food. Enough with the exercise. Enough with taking care of yourself. Let loose. Eat just to feel the food in your mouth. Eat whatever you want. In fact, bring up a spoon and a bowl, and eat in front of the TV, so you can feel worse and worse about the poor dead people on the show, and you can eat more and more to feel better. Won’t that be fun?”

That’s how it starts. If I’m very lucky, I can extricate myself from the TV by 11:00. You’d think by that point I’d be ready to call it a day, but you would be wrong. I come downstairs, and then I begin this strange, repetitive, non-functional routine (ever heard of those?). It consists of first going to the pantry and eating, in succession, some spoonfuls of almond butter (hmm, smooth and crunchy and healthy), some spoonfuls of tahini (hmmm, smooth and smooth and healthy), and some spoonfuls of granola (yum, refined sugar and crunchy stuff, too). Then it’s time to check the freezer, where I eat, in succession, spoonfuls of each kind of soy ice cream, spoonfuls of any other kind of ice cream, and then some chocolate. If there happen to be any large chunky things in the ice cream, like pieces of Snickers bars or cookie dough, all the better. I can begin excavating.

By this point, it’s about 11:30, and I’m almost literally stumbling around because I’m so tired. But I am determined to stay awake. So I go through the whole routine again, telling myself that I’ll just eat one more thing, and then that will be enough. It never is, of course. I finally have to close the freezer door and admit defeat. Whatever it was that I was searching for in the kitchen simply isn’t there. I could have avoided the entire last hour and a half and just gone to sleep.

But I never do. I’m like a kid again, afraid to go to sleep, afraid to let go of the day, afraid to lose consciousness.

Up to now, this problem hasn’t felt insurmountable. Lately, though, as I get more in tune with how the Asperger’s affects me, this strange late-night TV-and-food ritual has begun to make me feel literally sick. I go to bed feeling congested and sick to my stomach, and I wake up sick to my stomach and not wanting to eat or drink a thing.

I’m not sure how to work out of this pattern. I’m beginning to see its cause, however. Going to sleep means that I have to put in my earplugs, close my eyes, and stop ordering my world. I have to stop tracking and translating all the visual and auditory chaos I work so hard to keep in order.

How do I stop working so hard? How do I turn off the hypervigilance, the need to scan my environment and notice all its details? It feels like it hurts to stop. And I’m afraid. What will happen to the world when I sleep? What will happen to me? Will the chaos swallow me up? Will I awaken to a world that is completely overwhelming? Will I be able to put it back together?

So I use food and the TV to zone out while staying awake. I’m not working quite so hard. After all, the TV is creating its own order, and the food is just sitting there, waiting to be eaten. But I’m still vigilant. I’m still working. And ultimately, I have to go to sleep, and it never gets any easier.

There must be a better way.

© 2009 by Rachel Cohen-Rottenberg

12 comments

A Critique of the Theory of Mind (ToM) Test

April 2, 2009 Rachel Childhood, Critiques of Autism Theories, Diagnosis, Mainstream Theories of Autism, Mind-Blindness, Sensory Processing Disorder (SPD), Sensory Processing Issues, Theory of Mind (ToM)

The basic Theory of Mind (ToM) test was first developed by Wimmer and Perner in 1983, and then modified by Leslie and Frith in 1988. Wimmer and Perner used dolls, while Leslie and Frith used human actors. Regardless of the version, researchers have always come to the same conclusion regarding the results of the test.

I’ve always had my doubts about this conclusion.

The most common form of the ToM test is called the Sally-Anne Test. The ostensible purpose of the test is to measure a person’s ability to attribute false beliefs to other people. In the original version, the clinician uses two dolls, Sally and Anne. Sally has a basket, and Anne has a box. Sally puts a marble in her basket and leaves the scene of the action. Anne takes the marble out of Sally’s basket and puts it in her box. When Sally returns, the clinician asks the child where Sally will look for the marble.

To pass the test, a child must say that Sally will mistakenly look in her own basket first, evincing the belief that Sally is unaware that the marble has been moved. A child who fails the test will say that Sally will look in Anne’s box, where the marble is actually located. In Simon Baron-Cohen’s 1985 study of ToM in autism, 80% of the autistic children failed this test. The conclusion drawn is that the autistic children have an impaired (or non-existent) ToM and cannot understand that other people have information and beliefs different from their own.

I am very bothered by this conclusion. Very, very bothered.

I know that most neuro-typical researchers believe they have a “normal” ToM and can understand autistic people rather well. Needless to say, I’m quite skeptical. It’s not rocket science to know that you can read people who are like you, but have a harder time reading people who are unlike you. I would much rather hear an autistic person describe his or her own experience than hear a neuro-typical researcher making statements about how autistic people view the world.

Moreover, I am very suspicious about someone drawing a single conclusion from a psychological test. People are so complex that one child’s answer may be due to a large variety of factors, some of which may not ever have entered the mind of the researcher.

I had an insight into alternative reasons for a “failed” Sally-Anne test when I was at my OT visit this week. During one of the exercises, the OT and I were talking about why I always move my head when I move my eyes, and why I always have to turn my whole body to look at something.  Until I started seeing my OT, it had never crossed my mind that I might look at something without moving my head, or that I might turn my head without turning my whole body. It occurred to me that a certain kind of hypervigilance is at work here, and that this hypervigilance is a feature of Asperger’s Syndrome.

For me, the visual and auditory world is a chaotic, ever-changing place. My eyes are always darting around, trying to make sure that the world is still in order. My sensory processing makes the world seem vast and overwhelming. To me, change is a given. I never expect anything to stay in one place. I’m so attuned to small details that I’m keenly aware when something has been moved, when a pattern has been interrupted, or when symmetry turns into asymmetry. It happens constantly. I like to organize things because it gives me a sense of control over a world that feels like it’s changing in strange and unexpected ways.

So when an autistic child is asked “Where will Sally look for the marble?” perhaps that child is so used to the world being chaotic and overwhelming that he or she automatically assumes that Sally would never look in the place she last saw it. To the contrary: she’d automatically look somewhere else. Being given only two choices—a basket and a box—the child picks the box. Given how the child perceives the world, this conclusion is perfectly rational. It doesn’t indicate a poor ToM at all. It simply indicates that the child believes that Sally processes sensory input like he or she does. Just because the odds are against Sally being autistic doesn’t mean that the child’s conclusion is wrong. The child is simply drawing a conclusion based on his or her own experience.

In this, the child who thinks that Sally will look in the box is no different from the researcher who assumes that that Sally will look in the basket. The “correct” answer is based on the researcher’s own sensory experience. To someone without sensory processing difficulties, the world appears a more orderly and manageable place. A neuro-typical person would figure that the marble would be where he or she had left it. It’s not surprising then, that neuro-typical children “pass” this test 100% of the time.

A better test might be to have Anne move the marble to an unknown place and ask the child whether Sally will think the marble has been moved. If the answer is yes, the reasearcher might then ask, “Where would she look?” If asked that question, the child might just say, “She’ll look everywhere she can.”  That’s the answer I would have given as a child, because my experience was that nothing stayed the same for very long.  If I had taken the test, I would have gotten dizzy and disoriented just thinking of all the possibilities for where the marble might end up. I’d probably have ended up crying in frustration.

Moreover, as I reflect upon how I would experience the Sally-Anne test as an adult, I’m certain that with my auditory processing difficulties, I would need to write down the sequence of events in order to make sure I understood what was being asked. It’s very difficult for me to keep track of auditory information, and I generally need to make it visual in order to more easily grasp it and remember it. If I were to begin plotting out the sequence of events in writing, I’m virtually certain that a diagnostician would conclude that I was attempting to figure out the answer by deductive logic, rather than by using ToM. That diagnostician would be wrong. I would not be attempting to arrive at an answer; I would be attempting to make sure that I understood the question.

If researchers were to keep in the mind that ways that autistic people experience the sensory world, the results might not imply impaired ToM, but a different way of processing sensory information. The results might even imply that autism is a sensory processing condition, and that many of its features derive from sensory sensitivity, problems with sensory integration, and overload.

At least, that’s how it seems to me.

© 2009 by Rachel Cohen-Rottenberg

17 comments

Do You Remember Your Childhood Meltdowns?

March 25, 2009 Rachel Childhood, Girls and AS, Meltdowns

[Note: This post talks about the physical and emotional abuse I experienced as a child. The descriptions aren't graphic, but if you're not feeling up to reading about the subject, you might want to skip this post.]

Lately, I’ve been reading a number of blogs written by moms of Aspie kids. At some point, each mom describes her child’s meltdowns, and asks for guidance and support. The girls’ meltdowns sound every bit as spectacular as the boys’ meltdowns—a fact that interests me a great deal, because I don’t remember having any meltdowns as a child.

Except maybe one. Or, at least, the beginning of one.

I was four years old and the flower girl at my uncle’s wedding. I was all dressed up and sitting in an empty room with pine wood floors. In front of me was a photographer who was getting ready to take my picture. To my right were a number of relatives, including some aunts and uncles, who started making baby talk and saying “Smile!” as the photographer picked up his camera. I decided, right then and there, that I would not have my picture taken. So, when the photographer pointed his camera at me, I started screaming. I really didn’t know why I was screaming, and I still don’t know why. It just felt like the right thing to do. When the photographer put the camera down, I stopped screaming. Then, when one of the relatives in the wings told him to try again, he’d pick up his camera, and I’d resume screaming where I’d left off. After several attempts, lots more annoying baby talk from my relatives, and lots more screaming from me, the photographer finally gave up.

Fast forward to the wedding reception. There I was, between my mother and my father, and the photographer thought he’d pull a fast one on me and take my picture. I caught him at it, though, and I started yelling my head off. The next thing I knew, my father yanked me by the arm down to the basement, where he started dragging me with one hand while he hit me, over and over, with the other. Everything became a total blur. At one point, an elderly man tried to stop the abuse, but he failed. I have a vivid memory of my ankles burning against the floor. I must have been completely overwhelmed, because I don’t remember how it all ended. I just remember coming back upstairs and feeling very ashamed and very ghostly.

There were many other incidents of this kind of behavior from my father. Often, my mother would set it up by concocting some reason that I’d pissed her off that afternoon. She’d then torture me for hours by telling me what my father would do when he got home. I was so afraid of the pain that I once tried to bribe her by spilling out the contents of my piggy bank on her bed—an attempt at self-protection that only infuriated her. By the time my father got home, I was actually relieved that the suspense was over.

So, here’s the question I’ve been turning around in my mind: Is it possible to hold back a childhood meltdown out of fear? It certainly seems so. When I was about ten years old, I remember walking upstairs in our house and realizing that I wanted to start screaming. I held it all inside me, though, because I didn’t want to get hurt. I remember thinking about it quite clearly.

Apart from the screaming episode at the wedding, I didn’t melt down again until I was out of my parents’ house, 3000 miles away, and in my first serious (and tumultuous) relationship. Then, I made up for lost time and had a series of absolutely stellar meltdowns. The best I can say for them is that they resulted in getting me into therapy, which was a blessing straight from heaven. Therapy didn’t just save my life. It enabled me to create a life worth saving.

But what happened during all those years of sensory overload, with my mother’s screaming and crying, and my father’s hitting and shouting? For one thing, I dissociated from my feelings almost entirely. Except for sadness and fear, I don’t remember having any feelings. Dissociation is very common with trauma, so that doesn’t surprise me.

But I did more than dissociate. I imploded. The meltdowns, which should have been on the outside, took place on the inside. I held everything in—all my fear, all my sensory overload, all my confusion, all my frustration, all my loneliness, and all my anger. But it didn’t stay inside and dissipate. It just wore me down and exhausted me with no possibility of catharsis. By my sophomore year of college, I was unable to read a single page of a book and remember what it said. When I tried to write my papers, the script was jagged because my hand was shaking.

That’s when I fled to the west coast. My first adult meltdown about four years later was an unbelievable relief. I felt as though I’d waited for it all my life. Which I had.

Whenever I read about parents of Aspies being concerned about handling their children’s meltdowns in the best possible way, I feel an incredible rush of love and appreciation for those parents. I’m not sure they know how well they’re doing. They seem to wonder whether they are being good parents. I wish I could get them all together and shout, “You are spectacular parents!”

And now, a question for other Aspie trauma survivors: Do any of you remember only a very few childhood meltdowns, or none at all? I’m wondering how common this scenario is.

If you’ve read this far, thanks for coming along with me.

© 2009 by Rachel Cohen-Rottenberg

17 comments

Reflections on Being an Aspie Parent

March 16, 2009 Rachel Childhood, Communication, Marriage, Meltdowns, Parenting, Women and AS

000_0298I sometimes hear my fellow Aspies say that they are afraid to have children. Some fear being cold, remote, and unfeeling parents. Others are comfortable with the idea of raising a child with an ASD, but feel apprehensive about parenting a neuro-typical child.

Certainly, there are challenges related to having Asperger’s and raising children. I won’t deny it. But we Aspies bring incredible strengths to the process as well. No Aspie should disqualify himself or herself from parenthood simply on the basis of an Asperger’s diagnosis. My daughter Ashlynne is neuro-typical, and I wouldn’t trade being her mom for anything in this world. The past 16 years have been the best years of my life.

Our Aspie Challenges

1. Confronting family history

To me, dealing with one’s childhood issues is a must for any parent. Having a troubled childhood is tough on anyone, and it can have an even greater impact on an Aspie. Having an Aspie parent who is difficult can also put an Aspie child off the idea of parenthood altogether.

My father was an undiagnosed Aspie. He could be very fun or very distant, very supportive or very condeming, very loving or very frightening, depending on the day and time. I identified strongly with my father’s sensory defensiveness and confusion about how to interact with other people, but I swore that I would do everything differently when I became a parent. It was many years before I realized that my father’s Aspieness was separate from the things he had done. We were both Aspies, but we had choices about how we treated our children. He made his choices. I made very different ones.

While no one ever works out every life issue completely, I’m glad that I recognized and began working with mine before becoming a parent.

2. Meltdowns

Most Aspies have them. They’re not fun for anyone. How to handle them when you’re parenting is a big challenge.

I didn’t know I was an Aspie when Ashlynne was small, so I felt very, very guilty about my meltdowns. I thought that they were reflective of some terrible character flaw and that I needed to work harder in therapy. Now that I’m diagnosed, I feel much less likely to have a meltdown. I know what causes one, I can read the warning signs, and I know how to speak my feelings before they consume me.

Looking back, I can see that I mitigated the effects of the meltdowns by a) making sure Ashlynne wasn’t present during them, or b) taking special care to tell her that the meltdown was not her fault.

Has it worked? Certainly. One night, when I was in serious self-abasement mode, my husband said, “Oh, for goodness sake. Look at your child. How is she doing? Good self-esteem? Basically happy? Friends she enjoys? Yes? Can we start dinner?”

Every child has challenges in life, whether that child has an Aspie parent or not. I have watched apparently neuro-typical parents do far, far worse things than have a meltdown. Ask me sometime and I’ll try to describe what they did without resorting to every curse word I know.

3. Inability to do fun kid things in crowds

When Ashlynne was small, I braved the wilds of Chuckee Cheese and insanely chaotic birthday parties. After awhile, though, I realized that I ended up with a migraine or a case of exhaustion. So, we worked it out for her neuro-typical dad and step-dad to do the crowd stuff while I did the more quiet stuff. For a number of years, I have not entered any of the following places: a mall, an ice skating rink, a roller-skating rink, a party, a downtown New Year’s celebration, the 4th of July fireworks, or a first-run movie.

Before I knew about AS, I felt awful about not being able to do activities in crowds. I kicked myself over and over because I was not the fun parent. I thought I was lazy and let my husband do all the work. Now that I’m diagnosed, I have been liberated from these kinds of distortions. These days, I just say to my daughter, “I’m afraid I can’t take you to the mall, honey. You know those places aren’t for me.”

Her response is usually, “Yeah, mom. It’s not like I haven’t noticed.”

If I were married to a crowd-aversive Aspie and had the same neuro-typical daughter, I would enlist the help of other parents. Some parents love driving and being in crowds. Really! It’s amazing. There are other things I can do, and working out an exchange of skills to keep a balance with other parents would not be difficult.

4. Hyperfocus and special interests

Most Aspies are capable of high levels of focus when it comes to our special interests and projects. I am no exception. When Ashlynne was born, I had to make the shift from having lots of time to do whatever I wanted to being on call 24 hours a day. Most parents find this transition a daunting one. I certainly did. I can very clearly remember organizing boxes of memorabilia, and then reorganizing them, and then reorganizing them some more, just to get back a sense of control.

The good news is that once you get into the swing of things, you can start including the child in the things you enjoy. I remember thinking that my life would really take off when I had Ashlynne, because I could include her in my activities. And that’s exactly what I did. I’ve always loved to go for long walks, so I did, with Ashlynne in her stroller. I love picture books, and lo and behold, so did she! As she got older, I could homeschool her and learn new things every day. I could share music and art with her. I could teach her to read and share my joy in it. I could shop with her at thrift stores. I could help her carry the pounds of books she took out of the library each week. There was no end to the interesting things we could do together.

Our Aspie Strengths

1. Ability to verbalize

Over the past 30 years or so, the phrase “use your words” has become a staple of parenting. If your child is screaming, you say, “Use your words and tell me what’s wrong.” If your child is hitting someone, you say, “Don’t hit. Use your words instead.” If your child is pouting, you say, “I’ll be happy to listen to you if you use your words.”

And what do we Aspies use in our interactions with other people? Words! Lots of words! We don’t read nonverbals very well, and we don’t use them to regulate social interactions. Words are our life rafts in a sea of social confusion.

Personally, I consider words holy. So, I have always used them to express what I’m feeling or thinking, and I have always asked Ashlynne to verbalize her emotions and thoughts in return. Her dad and step-dad are also verbal people, so she’s had plenty of good role models. As a result, she has always been able to articulate her thoughts and feelings.

2. Ability to create structure

Not all Aspies are good at structuring things, but those of us who have the structuring gene provide a great service to our children (so long as we don’t overdo it). Kids need structure, and they feel very secure when they have it. Our Aspie need for routine can play a very positive role in the life of a child, so long as we take everyone’s needs and interests into consideration. It’s an opportunity to work creatively with your partner and child so that everyone can get what they need and keep a modicum of sanity. It’s not always easy, but it’s very satisfying when it works.

My ability to create structure allowed me to homeschool for eight years. I loved it. I created a curriculum every year, made lists of books under each subject header, and kept a daily homeschooling journal for the school district. One of the reasons I enjoyed homeschooling so much was that I got to spend time with my daughter in a structured way while being creative with the learning process. 

3. Honesty and directness

Our Aspie capacity for being honest and straightforward can work wonders for a child. I grew up in a family with a mom who was, to put it mildly, a very unreliable narrator. It was intensely confusing for me to try and figure out how things really stood. I still catch myself stating something that my mother said as fact, and then having to remind myself that the story may not be true.

Fortunately, children of Aspie parents do not tend to have this problem. If anything, they may have the opposite problem: thoughts and feelings stated so bluntly as to be hurtful. It is very important to frame honest feelings so that a child can receive them in the most constructive way. I am very conscious about how I say what I need to say to my daughter at any given time. Sometimes, bluntness is the best policy, especially with a teenager. Sometimes, it’s the worst choice. When it’s your child, you know what works and what won’t.

4. A passion for justice

I’ve always had a heart for justice. It’s a wonderful and painful gift. If you insist on fairness, having a child is a crash course in how completely maddening the world is. Kids regularly come up against the insensitivity of adults who think that children accrue human rights over a period of years, rather than having been born with them.

Enter the Aspie parent, who feels compelled to educate such people. Does it work? Usually not. I have written so many eloquent, well-considered, solution-oriented letters to people who weren’t capable of understanding a word I said. I wish I’d saved those letters. I’d compile them into a book called “If I Have to Explain Why, You Wouldn’t Understand” (with a shout-out to Harley-Davidson, who made the T-shirt with that slogan on it).

So, maybe you can’t change other people, but you can give your child a code of ethics that is sorely lacking in many kids. When we were homeschooling, Ashlynne and I would do lots of role playing about making ethical decisions—about not following the crowd to do wrong, about being inclusive, and honest, and keeping your word, and all the things that seem to be going out of style. She loved coming up with different ways to address ethical dilemmas, and the lessons have stayed with her.

5. Acceptance of non-conformity

If you’re an Aspie, you’ve always been in the minority. You’ve had to deal with being different, with being the odd one out, with being out-of-step much of the time. As painful as these experiences are, they’re very valuable for a parent. I entered parenting with an acceptance of a fairly wide range of behavior and outlook. As a result, lots of kids congregated at our house because they felt safe there.

In conclusion
Our children don’t expect us to be perfect. They’re looking for integrity, and they want us to make our best effort on their behalf. They’re nowhere near as hard on us as we are on ourselves.

So if you’re an Aspie, and you’re considering parenthood, don’t count yourself out. It’s a great adventure.

© 2009 by Rachel Cohen-Rottenberg

30 comments

AS and Loneliness

March 7, 2009 Rachel Anxiety, Childhood, Loneliness, Marriage

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

15 comments

Nonverbal Communication and Anxiety

March 3, 2009 Rachel Anxiety, Childhood, Communication, Girls and AS, Mind-Blindness, Theory of Mind (ToM)

Anxiety seems to be very common for Aspies. I’ve struggled with it my whole life.

I’m realizing that much of my anxiety centers around the fact that I cannot guess what people think of me in any given situation. I can’t look at their body language, or their facial expressions, or their subtle nonverbal cues (whatever those are) and make any kind of educated guess. Simply put, unless someone says something outright, I can’t tell whether people like me.

Now, I know that this whole issue should be immaterial at my age. I mean, really. I’m not in high school anymore. But if I can’t tell what people think of me, I have two options:

1. Forget about the subject entirely.
2. Worry about whether I’ve completely screwed up.

Since I’ve been diagnosed with Asperger’s, I’ve found it easier to choose option 1. After all, I’m never going to fit in, so why concern myself with some ideal future in which I’ll belong? There will always be that strange, invisible force field separating me from most of the world. I’ve burned so much energy trying to belong—in academia, in the corporate world, and in religious institutions—that it’s a relief to realize that I’ll always be the odd one out. It’s a done deal. Now I can get on with my life. I can be myself. I can live with integrity. I can be kind to strangers. I can accept other people for who they are. I can love my friends and family. I can have my hyperfocus and my special projects and my general eccentricity. On a good day, it feels quite liberating.

But I’m finding it hard to break the habit of going to option 2. Usually, the anxiety is just a low rumble, but it’s there. I can look back and see that yesterday, people at work liked me. They smiled. They joked with me. They told me what a great job I’d done. But what about today? It’s a whole new day. What if today is the day that I screw up and have no idea that it’s happened?

My anxiety increases if I have to deal with any kind of misunderstanding, no matter how benign. When I misunderstand something, all of my alarms start going off. I think, “Oh no, what did I miss?” At such times, I forget that misunderstandings are common in life. That’s why there is a five-syllable word for them. We Aspies aren’t the only ones who misunderstand other people.

But consider this: Most people communicate nonverbally about 90% of the time. That means that 90% of the time, most people are communicating on a frequency that many of us Aspie folks cannot hear. And that makes this Aspie nervous.

Part of the anxiety is knowing the way that women communicate aggression. We don’t tend to express it like men. Men are very straightforward. Women manifest aggression very subtly. Ever notice the group of girls in the lunchroom looking at someone and giggling? Ugh. I was usually the person being looked at. I think. Or maybe not. Who knows?

I brought up this issue with my husband the other night, and he added a new wrinkle to the whole question. He said that most people do not make a judgment about whether they like someone or not. It’s mostly situational. If a situation is working well, and Person A does something that works for Person B, then life is good and Person B likes Person A. If Person A does not fit into Person B’s game plan that day, not so good. But nothing is written in stone (unless something major happens). Usually, it shifts from day to day.

Just thinking about this way of interacting makes me feel disoriented. It’s so foreign to the way I think. I usually scope people out and get a sense of their energy. I know when I’ve run into someone who is bad news. It doesn’t happen a lot, but when it does, my instinct tells me to tread carefully. And believe me, I ignore my instinct at my peril. If none of my alarms go off upon meeting someone, I generally like and enjoy the person.

Somehow, I don’t think I’m the only one around here who works this way.

© 2009 by Rachel Cohen-Rottenberg

11 comments
« Older Entries   Recent Entries »