Journeys with Autism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hey, I’m doing my best.

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

© 2009 by Rachel Cohen-Rottenberg

According to my mother, I didn’t speak a single word until I was 2 1/2 years old. Then, when I started speaking, I spoke in full and complete sentences.

Because I was a first child, I might very well have saved up my words until I could put a sentence together and converse properly with the adults. It’s also possible that I took to print more naturally than to speech, and so simply didn’t bother to speak for a while. I’ve always intuitively understood the purpose of the written word, and I don’t remember a time when I didn’t know how to read.

Ironically, when I entered the first grade, I was completely confused by the Dick and Jane books. We worked on them every day, and the teacher spent each session explaining, in excruciating detail, how to sound out every word. I couldn’t imagine why she had to explain anything so simple in such a tedious way. I secretly thought to myself how lucky I was to know how to read, because if I had to learn it in school, I’d be lost.

One day, the teacher asked me to read aloud a page of the book. In the picture above the text, the father was juggling. So, although I could see quite clearly that the words said “See Father play,” I read the text aloud as “See Father juggle.” The teacher told me to sound out the words and to stop guessing, but I wasn’t guessing. “Juggle” was the word I saw spelled out in my head, and it was the right word for the picture. The word in my mind was more real to me than the word on the page.

I have since discovered that whenever I think, speak, or listen to another person talk, I see word pictures. That is, I see every word spelled out across my mental screen. Needless to say, I have never had a problem with spelling. Once I see a word, I can remember it quite easily. What’s more, when taking college exams, I could leaf through my notes in my mind until I found the page with the correct answer.

The written word has always been my natural medium.

© 2009 by Rachel Cohen-Rottenberg

Dreams

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

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

                –Langston Hughes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

When I was six years old, I made my first friend. Her name was Debbie, and she lived across the street from my house. We were the same age and immediately bonded over riding our bicycles together. I’d like to be able to say that we had an idyllic time, but the other neighborhood kids made sure to initiate us into the harsh realities of living on planet Earth.

There were some older boys at the end of the block who liked throwing sticks at our tires. I couldn’t understand why. What kind of fun is that? I figured that whatever their reasons for this absurd game, they’d get sick of it after awhile. So Debbie and I just kept going around the block, gamely riding through the gauntlet of flying sticks, until it was time to go home for dinner.

But the game continued, day after day, and showed no signs of stopping. I began to feel frightened—frightened not by the boys, but by my inability to understand what they were doing. When I told my parents what was happening, they became upset and told me that the boys were trying to knock us off our bikes. When I heard that, it was hard for me to fathom. It was the first time I’d ever experienced another child being cruel to me, and it just made no sense.

I am still that way today. I have been through so much cruelty in my life, and yet, any kind of cruelty shocks me. In fact, the shock is worse each time. The revulsion I feel is physical.

There was another boy who liked to scare me while I was riding my bike. He would stand out in the street and say “Stop in the name of the law!” So I stopped. Why? Because he said so. Literal me. I wasn’t any better at understanding deception than I was at understanding cruelty. I just took him at his word.

Once I’d stopped, he’d say “Can I see your license, please?” When I told him I didn’t have one, he’d say, “Well, then the police will come and throw you in jail!” I’d be so scared that I’d run into the house, shaking.

The game went on for a few weeks before my mother figured out a solution. She got a key chain with a replica of a small license plate and told me, “Next time he stops you, show him this.” So I did. And it worked. He never bothered me again. I was quite pleased.

But I still don’t understand. I don’t understand any of it. I’ve heard every explanation in the book, but I’ll never be able to feel inside me why someone would try to knock a six-year-old kid off a bike, just for fun.

© 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

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

[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

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 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

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.

If a researcher were to give such a test, the result would not imply an impaired ToM, but a different way of processing sensory information. It might imply that autism is a sensory processing condition, and that many of its features derive from sensory sensitivity and overload.

At least, that’s how it seems to me.

© 2009 by Rachel Cohen-Rottenberg