Journeys with Autism

This subject has been on my mind for awhile.

I have always felt much younger than everyone else, even when I was a child amongst other children my own age. And now that I am chronologically a middle-aged adult, I still feel like a kid, as though I haven’t really grown up.

I first remember feeling very young at summer camp. At eleven, I was one of the oldest kids there, and yet, I didn’t feel as grown up as I perceived others to be. To this day, I remember each person in my age group very vividly. I especially remember two girls, Dawn and Monique, who seemed to be adults already. I knew that they weren’t. My mind kept telling me that they were just eleven, and yet they seemed to be much older than I would ever be. It wasn’t just that they were taller. It wasn’t just that they were pubescent. It wasn’t just that I was a tomboy and they were much more girl-identified. It was simply as though they were in a dimension that I couldn’t enter—and that I would never enter.

And it’s true. I’ve never really entered that dimension. That’s not a bad thing, by any means. It’s just a fact.

At summer camp, I don’t remember anyone being unkind or unfriendly to me. No one bullied me there, ever. In fact, I have a picture of my group, and I am smiling quite happily. It’s clear that I felt very safe and strong there. I remember that summer with a lot of fondness, because I had tons of fun. Feeling like the baby of the group was not a liability. It was simply something I experienced, along with swimming, archery, dressing up for costume parades, and singing in the daily all-camp talent show. I was still a kid, so not keeping up with the other kids didn’t particularly concern me yet. I noticed it, and I wondered about it, but that was all. I was still content in my own little world.

Then there was high school, and the feeling of neutrality wore off. As an adolescent, I got the feeling that I was growing younger while other people were growing older, and it upset me. To this day, I’m not sure how to define this feeling. I wouldn’t say I was perpetually immature. In many ways, I was more mature and more serious than my peers. I was dealing with a world of pain at home, I was surviving it with great resourcefulness, and I was continuing to function relatively well. If there is a word to describe how I felt inside, I think the closest word would be childlike. I was always childlike, always gullible, always without guile, and never able to really understand the kinds of games that people seemed to find necessary. I watched it all as though it were a movie and there were no part written for me to play. After awhile, I got tired of just observing. I started taking on the personae of other people and tried to play along as well as I could. But it wasn’t like having a part of my own. In fact, it wasn’t much fun at all.

I’ve grown up a lot since then. I’m a wife, a mom, a professional writer. And I’m less gullible now. I’ve lived and learned many thousands of times over. Of course, I still tend to believe the words that people say (because, after all, why in God’s name wouldn’t they say what they mean), but I am learning to wait for follow-through and not get all excited just because people say the right words. Well, okay, I do get all excited when people say the right words, but I’ve come to realize that words are not enough. I watched too many people throw them away like used-up Styrofoam cups. It’s a sacrilege, if you ask me.

But despite all this growth, all my realizations, all my experiences, I still see the world through the eyes of a child.

It’s who I am, and when I’m not feeling apologetic about it, I like it. A lot.

This childlike quality may account for why I miss the past so desperately. There is a part of me that has never really left childhood, or young adulthood, or any part of my past. It’s as though everyone I’ve ever known, all my life—my parents, my brother, my extended family, my ex-husband and his family–are all still right where I left them the last time I saw them. I know they aren’t. I know that time moves on and that people move with it. But there is a part of me that still looks at photographs of my childhood home and thinks that if I could just open that screen door at the top of the front steps, my brother will be right there ready to play, and my mother will be having coffee, and my father will be watching television downstairs. I really believe that it’s all still there, and that I’m still there. And then, I’m shocked when I find myself unable to get back there.

The mystics say that from the point of view of the Eternal, there is no past, present, and future, and that everything coexists simultaneously. To human beings, living in time and space, everything seems to pass in a linear fashion, and yet, I can’t help but feel that it really doesn’t. Perhaps this is a spiritual gift that autism has given me. I have to stand apart from a world in which people mature in a linear fashion because I’ve matured in a completely different fashion. And by standing apart, I’m able to see through the eyes of a child newly arrived on the earth—a child who knows that she has always existed even as she knows that there was a time before she was ever born.

© 2010 by Rachel Cohen-Rottenberg

Bob and I have been having some great conversations lately about the differences between neuro-typical and autistic modes of perception and communication. In the course of these conversations, I’ve felt immensely frustrated, strangely comforted, and very enlightened, sometimes simultaneously. I’ll share the highlights of two of these talks.

The Way Bob Says It Is Not The Way I’d Say It
On Saturday, Bob went to synagogue for the Shabbos morning service, came home for lunch, and then went back for the Torah study in the afternoon. I took a long walk in the morning, in the course of which I met a huge, grey, wonderfully shaggy dog and his person. As you know, I hardly ever take off my headphones and earplugs to talk to anyone, but this dog was just too cool and I had to say something to the woman with him. I knew that I’d last for about a minute or so of conversation, and I did, and it was fine.

The woman who was with the dog obviously loved and appreciated him, and said something like, “You know, he wants to go smell all of these great things and wonders why we can’t smell them, too!” Whoa. Another person who knows that human perception is not all there is. I had been missing these small moments of friendliness with people out on my walks, and as I continued down the street, I realized that I had made the exception for her based entirely on instinct and a sort of childlike delight in her dog. And I thought, “That’s a very good basis on which to make an exception.” When I was done, I didn’t need to go and chat it up with several other people about their canine friends. This dog was an exceptional being, so I made an exception, and it filled me up, and it was fine.

When Bob got home in the afternoon, he told me that he’d run into Fred at shul (the guy who’d magically rendered me invisible) and had “put him out of his misery” concerning my non-response to his email. Fred had copied Bob on his email to me (the one I’d deleted), the email had made Bob “want to weep,” and Bob had gently told Fred that there was nothing he could do to make things better except to keep moving forward. So, of course, the first thing I did was to get defensive about the “want to weep” part, until Bob reassured me that yes, he understood that I was the injured party. And then, of course, the next thing I did was to ask for a blow-by-blow of the conversation, just to make sure that Bob hadn’t put Fred out of his misery without Fred realizing why he was in a state of misery in the first place. I do this a lot, especially when Bob is talking to someone who has been crummy to me. Actually, I’ve been doing it for about eight years now, and it’s gotten old, and boring, and I hate boring, because being bored makes me miserable. This time, though, I’d finally had enough of boring and was able to get beyond making myself miserable. Here’s a synopsis of how the conversation went:

Me: “I’m glad you talked with Fred and resolved things. But did you tell him why things happened as they did?”
Bob: “He understood the whole thing.”
Me: “How do you know that?”
Bob: “I don’t remember all the words. It was clear. He knew what he’d done.”
Me: “But did you use the word invisibility?”
Bob: “No.”
Me: “Why not?”
Bob: “Look, I say things my way.”
Me: “Yeah, but the invisibility thing is really important!”
Bob: [Extremely unsubtle body language that says I'm going to get up and do something else now.]
Me: “Wait, wait, don’t get up! Look, I’m not resolved about this thing. I mean, I told the guy that I needed him to use his words, and that I needed him to be honest, and that I needed him to tell me what was going on, and then he didn’t. Did he understand all that?”
Bob: “Look, I’m not in the guy’s head, and I don’t know what words he’s using to understand things, but he understood that he’d screwed this up and why, okay?”
Me: “Yeah, but how do you know what he understood if he didn’t say so?”
Bob: “I was there. I know.”
Me: “Yeah, but…Oh.”
[Silence]
Bob: “What?”
Me: “This is a neuro-typical thing, isn’t it? You say words, and he says words, and you do this whole nonverbal dance, and you somehow get it, and it’s done, and it’s in your own language. And then you come home and you say it to me. And then I try to translate it back into my language, and it doesn’t translate well.”
Bob: “I think that’s right.”
Me: “You know, from now on, I think you should handle these kinds of conversations. They’re a mystery to me, but you’re very good at them.”
Bob: “Thanks. I try.”
Me: “I know. I don’t give you enough credit.”
Bob: “I know. And you do really well speaking your language to people who understand you. It’s not your fault that neuro-typical people so often don’t understand what you’re talking about, or can’t fathom how sensitive you are or what you need from them.”
Me: “Thank you, honey. I love you.”
Bob: “I love you, too.”

So here was a day in which I came to two very important conclusions: 1) If I’m going to talk to an apparently neuro-typical stranger, keep it short and make sure it’s for a very good reason, and 2) let Bob be neuro-typical and handle things in his own way, because after all, he is completely supportive of my being autistic and handling things in my own way. (I think I’ve got that reciprocity thing down now.)

I Stand By the Side of the Road and I Still End Up In a Crash
The other day, Bob and I were driving down the highway, and I was talking about my frustration with socializing and making friends with neuro-typical people. One of things that became clear is that all of my challenges started showing up when I left the controlled situation of the workplace in 2003 and entered the completely chaotic situation of unstructured human interaction.

In the software industry, I did very well. I lasted 15 years, much longer than I’ve lasted in any other group of people. Because it was a limited, goal-oriented situation, it gave me the opportunity to do one of the things I do best: observe process. I figured out how meetings worked, what people needed from me, how to set limits, how to keep from working overtime, how to get what I needed to do my job, and so forth. I moved from job to job, but each time, I moved to a better job, and I did so based on my reputation, both personal and professional. Plus, working in the software industry coincided with a number of other successes: marriage, parenting, buying a house, and becoming part of a neighborhood.

And then, I left work to become a full-time mom and oy, all my troubles started. All of a sudden, I couldn’t navigate. True, I had entered hostile territory in my old community, but not every single person there was hostile, and a neuro-typical person might have handled the situation with more, shall we say, subtlety? I handled the situation with almost nothing except honesty and directness, because after all, isn’t that what Judaism teaches? Thou shalt not lie? And isn’t that what all my years in therapy had led me to believe I was destined to do—state my needs and feelings with clarity and without apology? So what was the problem? Why was everyone so upset when I kept speaking my mind and getting down to business? The more I tried, the worse it got. I’m not saying that I was to blame. Not at all. I’m just saying that I didn’t understand how to do it any other way.

But now, I’m starting to see that the way I do it has caused me to collide with other people and has allowed them to collide with me. When it’s over, there’s usually a scene of twisted metal and steam rising from cracked radiators, and I’m always wondering what the hell happened. Again. Just like last time. Over. And over. And over. And over.

In the course of my conversation with Bob in the car, I began to understand why this pattern has gone on for so long, and that I am already moving to a different paradigm. Here’s basically how the conversation went:

Me: “I know that neuro-typical people often find me rather blunt and feel offended by me. And it’s very weird to me, because in my sensory and emotional experience of the world, I feel like I’m getting hit with a blunt instrument a fair amount of the time. It’s not that everyone has ill will toward me. They don’t. It’s just how acutely I feel things. Most people don’t know how sensitive I am, and so they can’t understand how they affect me. And I don’t understand how important all their social rules and nonverbals signals are, so I don’t understand how difficult I can be for people to deal with. I just think that all that social crap—I mean stuff—is bullshit.”
Bob: “I know. There definitely seems to be a difference in the way that neuro-typical and autistic people experience bluntness.”
Me: “So how do neuro-typical people experience it?”
Bob: “Well, for us, there are two levels to navigating socially. One level is knowing what you want. The other level is trying to make sure not to crash into people’s sensibilities. It’s as though social life is like driving down the highway we’re on. You have to know where you’re going and how to get there. But if that’s all you know, you’re going to cause an accident, because you won’t be looking in your rearview mirrors, you won’t be watching the flow of traffic, you won’t know when to slow down, or speed up, or let someone into the lane, or pass them. Everything works on a highway if everyone is paying attention to everything. But now and then, you get someone going 95 miles per hour who insists on switching lanes constantly, driving in the breakdown lane, and getting past everyone, because he just has to get where he’s going and that’s all he can think about. That’s when the flow is threatened and people start crashing into one another.”
Me: “Okay, so I recognize myself in the person who just wants to get there. I recognize myself so well that I’ve learned to hang back in a major way and let everyone else go around me. In fact, I’ve gotten out of the damned car altogether, and yet, I still end up in crashes.”
Bob: “What do you mean, exactly?”
Me: “Take the situation with Fred. I didn’t walk into a complicated social situation with Fred. I kept it simple. I know better than to drive a car on a highway. I’ve learned my lesson. I wasn’t even in a car. I was standing by the side of the road, looking at the trees, waiting for him to get done driving hither and yon and meet up with me. After awhile, I realized he wasn’t going to come by and get me, and that made me sad, but I dealt with it. And then, all of a sudden, he broadsided me. I was just standing by the side of the goddamned road, looking at the trees blossoming, and the next thing I knew, I was lying next to the retaining wall and my head hurt really bad.”
Bob: “I see what you mean.”
Me: “You know, whenever this has happened in the past, I’ve thought, well, screw this, I’m getting off this highway and finding me another highway, because the people on this highway are crazed. And then I go and find another highway, and I stand by the side of the road, and bang! There I go, flying through the air, just when I’m enjoying the view. And I think, well, screw this, I’m getting off this highway, because the people on this highway are crazed. But now, after all these years, I can’t keep looking for new highways. They’re too dangerous. I imagine that there must be state police shouting at me on their bullhorns that pedestrians are not allowed on the roadway, and there must be people leaning on their horns as they swerve away from me, and the ones who come a little too close must be larger than they appear in the mirror, but somehow, I can’t see or hear them.”
Bob: “I think that’s true. So what do you do?”
Me: “I need to go find myself a bike path. Not a bike path where people wear spandex and race by you like they’re on the Tour de France. I mean a bike path where people are taking leisurely rides and other people are standing by the side of the road.”
Bob: “Sounds like a plan.”

So how do I find these other souls on this mysterious bike path? Easy. I write an article for my local paper, asking “Where are all the other autistic or otherwise atypical people in this community, because I’ve only met two others, and it’s statistically impossible that we are the only ones here.”

I know, I know. It’s very direct. But that’s just me.

© 2010 by Rachel Cohen-Rottenberg

When I posted a picture of my first quilted piece, a couple of you mentioned how much purple I’d used. Unbeknownst to y’all, I have a teensy-weensy issue with purple. Up to now, I’d imagined that I had this itty-bitty problem quite under control, but after reading the comments about my art, it’s clear that I don’t. Much as I try to avoid the color, it pops up of its own accord.

Okay, so what’s the problem? Two words: my mother. The woman loved purple. She was nuts about it. From the time I was seven years old, our house had plush wall-to-wall purple carpeting on both floors, and going up the stairs, too. The only rooms without purple carpeting were the bedrooms. Everywhere else, it was purple, purple, and then more purple. From 1965 on, long before other people were adorning their middle-class suburban domiciles with purple, my mother blazed her own trail and went for it.

What’s worse, in 1972, my mother got me a purple blouse that was the most uncomfortable piece of clothing ever known to humankind. It was made of that puckered material—maybe some of you are old enough to remember it?—and it was tight. It was worse than spandex. I don’t know how I kept from screaming and ripping it to shreds. I even have a class picture in which I’m wearing it. (I don’t look happy.)

So, here’s the deal: In the house in which I was raised, if something belonged to my mother, it belonged to no one else. Sharing was not her strong suit. If she were grieving the loss of a loved one, all the grief had to be hers. No one else could cry. No one else could express any emotion. No one else could talk about it. If anyone tried, my mother pulled rank and talked about how it was all about her grief. I didn’t grieve my maternal grandparents, who were as kind to me as my mother was cruel, for 30 years. I just wasn’t allowed to.

And yes, my mother was cruel. It wasn’t her fault. Something inside her was wired wrong, and even if she’d been willing to change, it might not have been possible. As it was, she was most decidedly not willing to change. In fact, as far as she was concerned, everyone else was always wrong, and she was always right.

Enter this sensitive, visually inclined Aspie. I’ve heard it said that not only do autistic people feel things acutely, but we also remember events and their associated feelings quite intensely, and for a very long time. I am no exception. For me, the visual world is saturated with emotion. I can’t help it. It’s just the way I am. So, the color purple is saturated with my memories of my mother. And some of those memories center on the idea that purple belongs to her, and not to me. I can’t have it, even though I love it.

It makes me want to cry with frustration. I feel like I’m in a vise and can’t get myself free of it.

Do any of you have experience with a similar issue? Have any of you managed to wring out the associations and replace them with your own? I’m quite interested in how other people handle situations like this one.

© 2009 by Rachel Cohen-Rottenberg

I’ve arrived at a major breakthrough regarding my ability to process speech.

For the past week or so, I’ve been noticing that even Bob has been speaking too quickly for me. He speaks very calmly and very straightforwardly, but I’ve been feeling the strain of trying to keep up with him. I mentioned it to him a few days ago, and he’s begun slowing down his verbal speed. The other night at dinner, we were talking at a much slower pace than usual, and I noticed something extraordinary: The only way for me to grasp his meaning was to concentrate on the word pictures that were appearing in my mind. Only by taking the time to focus on the word pictures was I able to get a clear and substantial understanding of what Bob was trying to say. 

And what’s more: Having the time to concentrate on the word pictures gave me time to respond in a meaningful way. I didn’t go on endlessly and tire myself out. I didn’t stumble over my words, transpose letters, or try to speak at break-neck speed, anxious all the while that I’d forget what I was going to say. I just responded, in the moment, in a purposeful way.

It’s a minor miracle, really.

I finally get it: My understanding of speech is visual, not auditory. It begins with word pictures, not with sound. My natural way of being in the world is to start with the spelled-out words that form in my head. Perhaps it’s for this reason that I don’t remember learning to read. I’ve always known how to read. At some point, I must have intuitively figured out the relationship between the spoken and the printed word. I’ve heard about children with Asperger’s who can read at a very high level at a very young age. I wonder whether they, too, can see all the words spelled out in their minds.

I’m beginning to understand why I have trouble keeping up with a conversation, even with just one other person. If there are too many words coming at me too quickly, I can’t take the time I need to see them in my mind. The word pictures are still there in my head, but they’re going by so quickly that I can’t keep up. If you put me in a room with more than one other person, the problem increases exponentially. And if you bring me to an unstructured social event, in which people are talking, drinking, eating, laughing, and moving around, I still see the word pictures in my head whenever my ears pick up a particular group of words, but the word groups are going in several different directions at once, and I’m still trying to follow all of them. No wonder my brain feels like it’s melting the minute I enter the room.

So here’s what I need from my friends and family members: I need them to slow down the pace of their speech, and I need them to leave pauses in which I can form a response. I know that some of my friends will be able to adapt to my style of conversation, and I know that others won’t be able to do it. For some people, it will be fairly simple. For others, it will be physically impossible. So be it.

I’ve seen this day coming for a long time. From the time I was young, I’ve felt that I must keep up, that I must go faster, but as the world kept speeding up, I found myself falling further and further behind. As a child, I remember trying to explain something to my mother, only to have her roll her eyes and say, “Just come out with it, for goodness sake!” So I learned to talk very fast, hoping like hell that somewhere in all that verbiage, someone might understand what I was trying to say. But all the while, I’ve wanted so much to slow everything down.

Why didn’t I? I’ll tell you why, even though it’s my deepest and darkest secret. I’ve believed all my life that if I have to slow things down—if a slow pace is the only one that works for me—then I must not be very smart. Now, I know that for many people, being less than very smart would not be the cataclysm it is for me. For me, it’s in the realm of the unthinkable. The belief that I’m very smart has driven all my hopes and all my dreams for my entire life. It’s what’s fueled whatever self-esteem I’ve built. It’s been the bedrock of my self-worth. It’s kept me going when I didn’t think I had anything left.

And now, I have to say to my friends and loved ones, “Please speak slowly so that I can enjoy a conversation with you.” In so doing, I’ve come face to face with my greatest fear: If I have to go slowly, I must be stupid. As I look that fear in the face, I see it transformed. It’s no longer my greatest fear. It’s simply the greatest myth I’ve ever mistaken for the honest truth.

Going slowly has nothing to do with intelligence. Nothing at all. Speech just takes the scenic route through my brain. That’s it. The whole reason that I go so slowly with speech is also the reason I’ve always been able to read. I see words spelled out in my head. My brain translates sounds to visuals, and then it has to translate a response into speech. What’s that got to do with being smart? It has nothing to do with being smart. It has everything to do with being different.

My husband told me that when his late wife was dying, she began to lose her ability to speak. As a result, she had to become very disciplined about not wasting any words. She had to speak more slowly, and the people in her life responded by slowing down their own speech. I’ve always thought their arrangement was possible because it was temporary. People slowed down their speech because those conversations were the last ones they would ever have with her. 

But I don’t have a terminal condition. I’m autistic. I need people to slow down their speech for me, and I will need them to do it for the rest of my life. How many people can do it? I don’t know. Time will tell.

© 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