Journeys with Autism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

Now that the CDC has officially revised its figures concerning the number of autistic children in the US, I’ve read more than my usual share of maddening articles on the subject.

For those of you who very wisely protect your sanity by staying away from as many news sources as possible, the new data shows that 1% of American children are autistic—which, by no small coincidence, mirrors a recent study showing that 1% of adults in the UK are autistic. Of course, that 1% figure appearing in two different studies must be a coincidence. It’s only my tragically broken autistic mind that impels me to point out that our adult autistic friends across the pond were once little autistic children across the pond, and that when they were little autistic children, they made up 1% of the human beings who had not yet become adults. It’s amazing, I think, and a testimony to the insular thinking of the average American, that those 1 in 100 adults in the UK are not considered the hapless victims of a tragic epidemic that took place a generation ago, but that those 1 in 100 American children today are proof positive that a terrible disease is sweeping our country.

To read most of what passes for journalism lately, you’d think that autism was almost completely unknown in my generation. And perhaps it was. After all, I’m autistic, and no one knew. Wait a minute! Could that be it? Is it possible that so many of us were left undiagnosed? Is it possible that we were simply dumped into the absurd categories of ”Model Student,” “Lazy Daydreamer,” and “Behavioral Nightmare”? Is it possible that no one knew why some of us were sitting quietly in school, staring vacantly, or politely pretending to attend to the lesson, while others of us were jumping out of our chairs every few minutes and disrupting everything?

No one, it seems, wants to believe that we were once autistic children. No one, it seems, wants to admit that so many of us have spent so much of our lives struggling along, not understanding why we can’t quite connect with most other human beings on the planet. They do not want to think about it. When you raise the issue, they dismiss us by saying that our autism is not like the autism of today. Oh, no. Our autism, they tell us, is “mild autism.” It makes us a little eccentric and socially awkward. In fact, they tell us, someday soon, we’ll be given a whole other trendy diagnosis, and then they won’t even have to think about us at all.

To such people, I can only say: There is no such thing as mild autism. It doesn’t exist. Saying that someone is mildly autistic is like saying that someone is mildly pregnant or mildly brilliant. Some words just don’t take well to modifiers. I know that people like to distinguish between “high-functioning” and “low-functioning” autism, but those categories have become meaningless to me. The only distinction I can make anymore is between the following two types of autism:

Category 1 Autism: The kind that some people like to think they understand. We verbal folks who can pass for neuro-typical have Category 1 Autism.

Category 2 Autism: The kind that most people have decided that they will never understand. Our nonverbal friends, who will never pass for neuro-typical, have Category 2 Autism.

Today, I had the great good fortune to be an autistic person from Category 1, holding the hand of an autistic person from Category 2, and taking a long walk through my neighborhood. It was a very interesting experience. The differences between the two of us were apparent to outside observers, I’m sure, but I was most struck by the similarities between us:

a) She does patterns by moving her fingers. I wasn’t able to figure out her patterns from holding her hand, but they were definitely there.
b) Her eyes take in everything.
c) She rocks to self regulate.
d) She orders things in her own patterns when no one else even notices that they’re out of place.
e) She touches things randomly when she walks (cars, trash cans, what-have-you) in order to ground herself.
f) She stops and stares at things that others don’t consider important.
g) She doesn’t look at people who are coming down the street toward her. (I avert my gaze, while she closes her eyes.)
h) She likes to hold a familiar item in her hand and grasp it firmly.

Most people undoubtedly perceived me as “semi-normal” and “aware.” (If it weren’t for my headset, I’d look totally normal, but I’m bored with that, so who cares?) I’m also certain that most people saw my friend as “abnormal” and “out of it.” But that’s just perception. Most people cannot feel how flooded we are by the sensory world. They cannot know how acute and how challenging our sensitivities are. They also cannot know that we both laugh, cry, and live with people who love us for who we are. They cannot know that my Category 1 Autism is more difficult than they will ever understand, and that her Category 2 Autism is not the disaster they think it is.

They can’t know, because they can only see us from the outside. They can listen and learn, but that takes a willingness to believe that there are more ways of seeing than they’ve ever suspected. I’m not sure that most people can do it. I’m grateful for the ones who try.

© 2009 by Rachel Cohen-Rottenberg

I’ve been wondering whether there is a connection between my auditory oversensitivity and my inability to see nonverbal cues. I rely on my visual sense a great deal, and I experience the visual world with great intensity, so being unable to see nonverbals that are (apparently) right in front of me is very puzzling. It’s as though some obstacle were in the way.

I have read posts by other Aspies who say that they can see a person’s nonverbal signals all at once, but that they can’t understand the signals until later. These folks can replay interactions in their minds in order to view the nonverbals individually and interpret them. I envy Aspies who have this ability. When I’m interacting with a person, I don’t see any nonverbal signals of which I’m aware, so understanding these signals later is out of the question.

In last week’s ASL class, I began to get a hint of what might be the source of the problem. I was blocking out sound almost entirely, so I could not make out any words for the entire two hours. Because people were allowed to speak in the first two classes, some of them were taking the opportunity to ask a lot of questions. I couldn’t hear the questions, but my virtual deafness allowed me to observe people without any auditory distraction. All at once, I noticed that I was watching how one of my classmates used her hands and her facial muscles when asking a question. The inclination to watch felt intuitive, but my interpretation was on a wholly conscious level. I thought, “She’s moving her hands in such a way as to appear authoritative about what she’s saying. Her face gives me the feeling that she takes the subject matter of the question very seriously.”

I have no idea whether my interpretation was correct, but based on my previous interaction with the person, it was (at the very least) a good guess.

So, I got to thinking: Have I failed to see nonverbal signals all my life because I’ve been so distracted and overwhelmed by sound? As compelling as the visual world is to me, the auditory world commands my attention. Whether I’m listening to someone use a hammer, whisper in a movie theatre, or talk in a large group, my response is always the same: I can’t help but hear it, and I can’t help but be overstimulated and overtaken by it. It’s entirely possible that I’m not interpreting the nonverbals because my ears have been using up too much of my attention. Besides, because I’m always a click or two behind in a conversation, I’m spending so much time parsing the words that I haven’t got time for the nonverbals. And once I parse the words, the nonverbals that went along with them are already gone.

It’s also possible that my visual and auditory systems function in analogous ways. Just as I can hear everything very clearly, but can’t prioritize, filter, or interpret competing sounds, so I might also be seeing all the nonverbal signals very clearly, but can’t parse, separate, or interpret what’s right in front of me. When I walk into a large, noisy social gathering, I hear very little except pure, undifferentiated sound, and I overload immediately. Perhaps each person has the same effect on me visually: all the nonverbal signals get piled on top of one another until I see nothing except undifferentiated gestures and facial expressions whose cumulative impact is quite pronounced. After all, a face-to-face conversation is an extremely intense experience for me. It’s unusual that I can talk with anyone except a close family member without becoming overwhelmed. Perhaps I avert my eyes because I’m actually overloading on nonverbals.

If taking in undifferentiated sound has an impact, taking in undifferentiated nonverbals must have an impact as well. With sound, the result is auditory overload; with nonverbals, it seems to be empathic overload. Although I can’t parse the nonverbals, I have a very powerful experience of almost every person with whom I come into contact. I can feel the person’s mood and emotion. It’s a wonderful ability to have in a scary situation, but it’s close to disabling when I’m just trying to go grocery shopping.

Some people would call this kind of intuition a sixth sense, but I don’t believe that I have a sixth sense. I seem to have exquisitely acute senses that bring me information in ways that I don’t always consciously understand.

© 2009 by Rachel Cohen-Rottenberg

In an October, 2007 article, Henry Markram, Tania Rinaldi, and Kamila Markram of the Brain Mind Institute, Ecole Polytechnique Fédérale de Lausanne (EPFL), Switzerland, posit a new theory about how the brains of autistic people work. They refer to autism as Intense World Syndrome, turning widely accepted thinking about autism on its head.

I recently stumbled across this article, so I thought I’d share some of its insights. While I dislike some of the authors’ attitudes toward autism and autistic people, their theory seems to reflect many of the ways in which we describe our own experiences.

I’ll get the negative aspects of the article out of the way first, and then we can look at the positive things the authors have to say.

Problems with the Article
1. There is the usual garbage about how we suffer from a horrendous disease. For example, the article begins with the following words: “Autism is a devastating neurodevelopmental disorder…”

They’re lucky I’m tenacious and hopelessly optimistic. And autistic and hyper-focused. Otherwise, I’d have stopped right there.

2. The authors show a stunning lack of knowledge about how autistic people learn and develop over the course of our lives. For example, the authors state, “Autism is now recognized as a neurodevelopmental disorder manifesting within the first 3 years after birth and progressively worsening in the course of life.”

I guess I’m lucky I can still write. I’d better get going on the rest of this post before I lose any more brain function.

3. The authors make the blithe assumption that autism can (and should) be cured.

They first posit that autism is a disorder in which the “normal unfolding of the genome can be sabotaged by an epigenetic attack.” An epigenetic attack is one that causes a genetic change without affecting the underlying DNA sequence. The authors speculate on possible causes of such an attack, such as environmental toxins.

But never fear. There’s hope for us mutants yet. The authors continue: “Understanding the ultimate cause of autism lies in understanding the nature of the epigenetic attack and developing the ultimate cure for autism lies in being able to prevent this attack and reverse its effects once it has occurred.”

So someday, someone may try to turn me into a normal person. Good luck.

4. They come to their conclusions based mainly on research using lab rats. (I’m not defending the rights of lab rats. I’m pretty warm and fuzzy toward most animals, but as far as I’m concerned, rats are on their own.) My issue is that they use rats to arrive at conclusions that they could also arrive at by talking to autistic people.

If I didn’t mind flying, being away from home, or going on sensory overload, I’d probably spend some time outside one of these labs with a sign reading:

TO THE NEURO-TYPICAL DOCTORS:
FORGET ABOUT THE RATS.
THERE IS AN AUTISTIC PERSON OUTSIDE.
SHE WILL TALK TO YOU FOR FREE.
JUST USE YOUR WORDS, AND YOU WILL FIND TRUTH.

Okay, so much for the problems. Let’s get to the good stuff.

Definition of Intense World Syndrome
The authors lay out their hypothesis in this way:

“Based on the recent multi-screening results obtained on the valproic acid (VPA) rat model of autism, we propose here a unifying hypothesis of autism where the core neurophysiological pathology is excessive neuronal information processing and storage in local circuits of the brain, which gives rise to hyper-functioning of the brain regions most affected. Such hyper-functioning in different brain regions is proposed to cause hyper-perception, hyper-attention, and hyper-memory that could potentially explain the full spectrum of symptoms in autism.”

Neurons process and transmit information by electrochemical signals in the brain. Sensory neurons respond to visual, auditory, tactile, and other stimuli. So, according to these scientists, autistic people do an excessive amount of sensory processing. We experience the sensory world more intensely than other people, we attend to details in a more focused way than other people, and we store information (that interests us) far longer than other people.

Makes sense to me.

They continue: “We propose that a common molecular syndrome is activated in autism that produces hyper-functioning in a coordinated manner by forming hyper-reactive and hyper-plastic microcircuits in different brain areas.” As far as I can tell, they are positing that the autistic brain reacts more strongly to sensory stimuli than a neuro-typical brain (thus, the “hyper-reactive” microcircuits), and rearranges the connections between its neurons more often than a neuro-typical brain (thus, the “hyper-plastic” microcircuits).

The researchers then suggest that our hyper-reactive and hyper-plastic microcircuits cause us difficulty in integrating sensory stimuli. Thus, we tend to focus intensely on one part of the sensory world, and we have difficulty shifting our attention:

“This core hyper-functioning pathology is proposed to cause the spectrum of autistic symptoms by rendering local neural circuits hyper-sensitive to novel and past stimulation, and once activated, these microcircuits could become autonomous, difficult to control and coordinate with the activity in other microcircuits. Hyper-reactivity and hyper-plasticity are therefore proposed to cause exaggerated perception to fragments of a sensory world that are normally holistically correlated…and furthermore to cause hyper-focusing on fragments of the sensory world with exaggerated and persistent attention. Such hyper-attention could become difficult to shift to new stimuli…The positive consequences are exceptional capabilities for specific tasks while the negative consequences are a rapid lock down of behavioral routines to a minute fraction of possibilities, which are then repeated excessively.”

The authors also discuss their finding that autistic people may have a hyper-reactive amygdala, the part of the brain that processes memory and emotion. Because the amygdala is hyper-reactive, they believe, we do not let go of fear memories in the same way as neuro-typical people. We therefore perseverate as a way to calm and channel our anxiety.

Having concluded that our brains are highly sensitive, the authors assert: “In such a scenario, the world may become painfully intense for autistics and we, therefore, propose autism as an Intense World Syndrome.”

I think that’s right.

Now for the fun part: upending the accepted theories.

Poor Executive Function Theory
The term executive function refers to a person’s ability to disengage from his or her current environment in order to act upon a model of behavior in the mind or a series of future goals. Because autistic people tend to have poor executive function and a preference for sameness and routine, researchers had assumed that this deficit derived from hypo-functioning of the pre-frontal lobes.

However, the Intense World Syndrome theory posits that poor executive function derives from hyper-functionality of the brain’s circuits, causing an autistic person to attend to, remember, and focus on particular pieces of information, especially stimuli in one’s current environment.

Theory of Mind (ToM) and Mind-Blindness
Just because it’s so wonderful to hear someone else say these things, I’ll let the researchers speak for themselves:

“Autistic people are thought to be severely impaired in empathising with other people and ‘reading their mind,’ which is captured in the ‘theory of mind’ or ‘mind-blindness’ theory of autism… The proposed deficits in reading other people’s feelings and thoughts and the lack in empathising with other people has been commonly used to explain the impairments in social interactions and communication as well as inappropriate responses in social encounters…

We…propose that the autistic person may perceive his surroundings not only as overwhelmingly intense due to hyper-reactivity of primary sensory areas, but also as aversive and highly stressful due to a hyper-reactive amygdala, which also makes quick and powerful fear associations with usually neutral stimuli. The autistic person may well try to cope with the intense and aversive world by avoidance. Thus, impaired social interactions and withdrawal may not be the result of a lack of compassion, incapability to put oneself into some else’s position or lack of emotionality, but quite to the contrary a result of an intensely if not painfully aversively perceived environment.”

I think they’re onto us now.

The Hypo-Functioning Amygdala Theory
I’ll let the authors speak for themselves again:

“The current version of the amygdala theory of autism assumes a hypo-functional amygdala, which leads to lack or inappropriateness of social behavior in autism. In this view, autists fail to assign emotional significance to their environment and for this reason are not interested in others, do not attend to faces, and fail to engage in normal social interaction…[W]e propose that this view may be not correct and that quite to the contrary, the amygdala in the autistic individual may be hyper-reactive which leads to rapid excessive responses to socio-emotional stimuli. In this view, the autistic person would be overwhelmed with emotional significance and salience. As a consequence, the subject would want to avoid this emotional overload and would have to withdraw from situations, such as social encounters, which are rich in complex stimuli.”

Amazing, isn’t it? I keep reading this paragraph over and over, just to make sure it’s real.

The “Autistic Person Is Missing Some Puzzle Pieces” Theory
Far from considering autistic people as incomplete individuals with missing pieces, the authors conclude that “the autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”

In Closing
I found my way to the Intense World Syndrome theory by way of a great article by Maia Szalavitz. The article discusses Intense World Syndrome and contains some very good information about autism and empathy. 

Looks like word is getting out.

© 2009 by Rachel Cohen-Rottenberg

Last night, I reached a milestone in my life. And today, I am so relieved. Tired, but unbelievably relieved.

The backstory: We’re having a new ceiling put into our living room because the old plaster was flaking off. The process entails moving everything out of the living room into the dining room so that the contractors can work. The whole job will probably take another three days. So everything is piled up in the dining room, and I have to walk through the mess if I want to use the bedroom, the kitchen, or the bathroom. Did I mention that I hate clutter?

Yesterday, the contractors were supposed to be here at 9 am. I had planned to do some writing in my loft in the morning, while they were here, and then hang out in the rest of the house after they’d left. It’s always difficult for me to have people in the house, especially ones making lots of noise, so I figured I’d burrow into my loft for a few hours, and by the time I came out, they’d be gone.

Nice plan, huh? Unfortunately, the guys didn’t get here until 11 am or so. Isn’t it fun when people are late and blow your plans right out the window? I got very agitated. I could feel my nervous system panicking. They had good reasons for being late, but I felt like my day was getting totally disrupted. 

In addition to getting here late, the guys were here a lot longer than I’d thought they’d be, and the whole thing became very overwhelming and disorienting. There is only so long that I can hide upstairs before I need to go to the kitchen and get something to eat. And, of course, the irony of the whole situation is that the guys doing the work are wonderful people—friendly, conscientious, and good at what they do. In other words, they’re the kind of people that anyone without a jangly nervous system would love to have around.

But I’ve got a very jangly nervous system, and by the evening, it felt like my day had been turned upside down and shaken a few times. Needless to say, I started to get upset. The disorder in the dining room was driving me nuts. My nervous system was so keyed up that I was shaking. I was feeling angry, and I said so, but the anger very quickly turned to tears. My meltdowns seem to follow this pattern these days. I go through the anger part really quickly and then go straight for the sadness.

I felt really exhausted, but it wasn’t just because of the work on the house. What happened yesterday was just the proverbial straw that broke the camel’s back. What I’m really exhausted by is all the energy I’ve expended since forever in my ongoing quest to become neuro-typical. Now that I’ve realized that I don’t have to pretend anymore, everything I do out in the world feels impossible. Working at the store feels exhausting, because every single time I have a conversation with anyone, I have the following script running in my head:

“Okay, smile……Make eye contact. No! Not that much……Pause. Say something helpful, but don’t jump in too fast……Wait……Wait……Now! Say something clever……Very good……People laughed……Now, make more eye contact……Okay, the conversation is winding down……Okay……Oh, shit, how do I exit gracefully from this interaction? I have no idea……Help……Okay, okay, I’ll just use my strong voice and act confident……There……I’m walking away now……G-d, I feel like such an idiot….”

For some strange reason, running this script just isn’t fun for me anymore.

My husband and I talked for a long time last night, and he helped me to see that almost all of the commitments I’ve made in the outside world are optional. I don’t have to do them. I made most of these commitments when I was still thinking that I just had to work really hard at the store, or on my OT work, or whatever, and things would get better. Even though I knew that I couldn’t change my neurology, even though I had accepted that I wouldn’t make friends at the store, even though I knew that the OT work might not have any effect at all, I still went into everything with the old idea of progress. It’s hard to shake. In large part, it consists of trying to be the NT that I think the world expects me to be. I know I’ll never get there, but over the course of my life, I’ve tried getting as close to it as inhumanly possible.

At some point in the past six months, it did dawn on me that I might not be the quite the actor I thought I was. But this realization didn’t stop me from trying. I still catch myself working on my big, ongoing, lifetime challenge to see how close I can get to “normal.” I used to wonder whether I’d actually fooled anybody, but you know what? I don’t care anymore. The only way for things to get better is for me to start untangling my true Aspie self from all my ridiculous mega-efforts to be someone I’m not. 

I’ve had an NT impersonator job all my life, and it’s time for me to retire. Fifty years is enough. It really is. I don’t need a pension, and I’m not going on the public dole. I’ve got all kinds of great things I love doing, and the old job is getting in the way.

So, although I love my OT, driving an hour to see her is really out of the question. I’m so exhausted by the intensity of all the sights, sounds, movement, and emotional energy out there in the world that I need to pull back in a major way and have some respect for myself. And I don’t want to work at the store again until I find some way to be there without constantly running my script. Having come to these realizations, I emailed my OT and the people in charge at the store. My OT wrote me back a really lovely, supportive email. I’m pretty sure I’ll get a similar response from the people at work. After all, I have taken care to surround myself with very nice people.

Meanwhile, here I am, living in this strange transitional state of knowing that the old ways won’t work, and wondering what the new ways will look like. I hate transitions, but there you are. I don’t know what the future has in store, but I do know that my marriage, my mothering abilities, and my capacity to be a friend all depend upon being in some kind of harmonious relationship with who I really am.

I’m only beginning to understand how different I am from most people. I’m only beginning to understand that most people do not experience the world with anything remotely approaching the intensity that I do. And I have to respect that. I have to respect the fact that just going outside and seeing all the green leaves on the trees can be a beautiful and overwhelming experience. It’s overwhelming because it’s so damned beautiful.

Perhaps I need to experience the world in small portions. Something like that.

It  feels so good to start over—to get up in the morning and tune into my hyper-aware, hyper-sensitive Aspie nervous system and see what we can do together. Last night, I didn’t sleep well, and when I have things to do in the outside world, I always feel very anxious trying to do them without enough sleep. But this morning, I realized that I didn’t have to go out there. I could be tired, and it would be all right.

The one outside commitment I’m keeping is to my new therapist. First things first. I want to work on accepting who I am, and she seems quite willing to help me. So that’s where I’ll begin. Again.

© 2009 by Rachel Cohen-Rottenberg

I saw my new AS-literate therapist for the first time on Tuesday afternoon. We’re going to have three sessions and then evaluate whether we can work together, but I’m feeling very good about her already. In many ways, seeing her was a very intense experience, and it has sent my thinking in very positive new directions.

The Experience
The therapist is in New Hampshire, about 35-40 minutes from where I live. I found the drive on Tuesday to be very challenging. I was anxious about meeting a new person, and I was desperately hoping that she wouldn’t say something clueless or patronizing about AS. I had sent her a link to my blog so that she’d have some background on where I’m coming from, but still, you never know.

I was also afraid of getting lost, because like many of you, I was born without any discernable sense of direction. I had given myself extra driving time in case I misread the directions she’d emailed to me. Fortunately, at my request, she had taken care to add a lot of detail, so I got to her office with 15 minutes to spare.

Within five minutes of my arrival, the therapist saw me parked outside, came out, introduced herself, and invited me to come in and get the session started early. Of course, on this basis alone, I liked her immediately. How many times does a health professional get your appointment started on time, never mind early? So I started to feel optimistic.

She began the session by saying that she really liked my blog, and that I was doing a great service with it. She was very straightforward and sincere when she said these words, so I had no choice but to believe her.

That was a good start. I began to feel even more optimistic.

Since we hadn’t talked on the phone, she asked me what I wanted from the therapy. I said that I wanted to work on accepting myself just as I am, which includes having the disabilities that come with Asperger’s. At this point, she very gently stepped in and said, “You know, I think of Asperger’s as a different way of thinking and being, not as a disability.”

I know that I should have felt even more optimistic in the face of this statement, but I was determined not to let her sugarcoat my experience. (I don’t think that’s what she was doing, but the fear was there, so I went with it.) I started my shpiel about feeling that on some days, Asperger’s gives me lots of strengths, and that on other days, it’s a really debilitating disability. I described some of my sensory deficits, my difficulties going shopping, cleaning my house, driving, and so forth. I expressed my frustration and the low self-worth that emerges when I’m not able to do basic tasks without feeling cranky, dizzy, and exhausted.

She acknowledged my frustration, and then she said the most amazing thing. “Well,” she said, “it’s true that you can’t go grocery shopping very easily, but on the other hand, how many people who go grocery shopping easily can write the way you do?”

I had to acknowledge that there was truth in what she was saying. Then, when she asked me about what I do out in the world, I talked about working in the thrift store. Once again, I focused on how hard the sensory overload felt, and said that I didn’t feel that I could do much at the store at all. When she heard that, she once again put my Aspie strengths into focus and said, “Even in the short time you’re there, you’re doing a great service at the store, and the staff values it.  How many people can just walk into a place with your kind of focus and start organizing things?”

This type of interaction kept happening over and over. I would mention something I was doing, and then proceed to devalue it by bringing up all the things I couldn’t do. She kept turning my statements around to give me a different perspective. Her respect, and even admiration, for people with Asperger’s was palpable. I finally broke down and said, “You know, I just feel so badly about myself, even in this room with you. I can’t maintain eye contact with you because I need to look at the floor in order to think. I feel like I talk too much and get disoriented and exhausted by it.”

At this point, your average therapist would have given me that benign therapist look. You know the one I mean. It’s that look that says, “There is something deeper here you’re not seeing. I know, because I’ve studied psychology.”

But this therapist said, “It’s perfectly fine that you don’t make a lot of eye contact with me. And if you need to be quiet at different times during our session, that’s fine, too. By the way, is there anything in this office that is visually distracting to you?”

It’s a good thing I was sitting down, because if I’d been standing up, I probably would have fainted. It’s so unusual that anyone asks me that question that at first, I was shocked. But then, I realized that I’d better seize the moment, so I said, ”Yeah, actually, that stuff piled on the bench over there is bothering me because it’s kind of random, and that book over there is bothering me because it’s kind of tilted and the color on the cover hurts my eyes.” She said she’d get that fixed for next time, and that if I felt distracted by the environment in any other session, I should speak up.

Before we finished the session, she talked about how Jung believed that mid-life is an opportunity to truly become ourselves—an opportunity that takes a lot of courage to embrace. At that moment, I felt very grateful to have Asperger’s, because its challenges and its strengths are giving me the impetus I need to find that courage and to be myself.

New Directions
So, I’ve been thinking: What can I do well, and what are my difficulties? Consider the following:

What can I do well? 
I can write in a way that has meaning for me and for other people. I can sing in a strong, clear voice. I can make beautiful art from found objects. I can dig up a whole yard using a shovel, a lot of muscle power, and a ton of sweat. I can plant beautiful flowers, vegetables, and herbs that bring enjoyment to my family and to my neighbors. I can de-clutter my living space and organize my house so that it feels calm and restful. I can do all the dishes and the laundry (although my husband and I compete over the laundry, because we both enjoy it so much). I can be a good listener for Bob and for Ashlynne. I can give them honest, constructive responses to the challenges they face in their own lives. I can focus like there’s no tomorrow. I can get upset with injustices that other people never even notice. I can advocate for my kid when she needs it (although, these days, she’s quite good at advocating for herself). I am highly empathic, hard working, fair minded, honest, trustworthy, and without guile.

What are my difficulties?
Cleaning my house, food shopping, cooking, driving, making small talk, being around a lot of people, and working at a conventional job.

Anybody notice anything?

1. The things I can do well far outnumber the things I can’t.

2. No one can do everything on both lists.

3. The things that I can do well are just as important than the things I can’t. After all, what would I rather do, make small talk while feeling desperate to be understood, or write a blog so that none of us has to feel so alone? And at this point, I don’t need to have a conventional job, so why should I feel so badly about it? I should be happy!

I used to think that all the basic tasks I find so difficult were the most important things. I used to think that all the things that I do well were just self-indulgent hobbies and useless oddities that were helping me pass the time between now and the moment of my death. I kept looking out into the neuro-typical world and feeling “less than” because I couldn’t shop and socialize and get invited to parties, or even get noticed by most people at all.

I now realize that when people ignore me, it’s not because they don’t see me, it’s not because I’m not important, and it’s not because I’m missing a piece. It’s because I’m putting out very intense signals that aren’t the ones they’re expecting. My husband has told me as much. All those many times that I’ve been ignored, or patronized, or laughed at, I thought it meant that there was something wrong with me. Now I realize it means that there is something very right with me. I’m very intense, I’m very focused, I’m very loving, I’m very sensitive, I’m very empathic, and I do not suffer fools graciously. I think that’s all very good. In fact, I think it’s better than very good. I think it’s great.

I’m not like most people, but there is nothing wrong with me. For the first time, I am beginning to feel that I have value. I have my strengths and I have my difficulties, just like everyone else. I don’t have to apologize for the things that are difficult. I just have to assert my strengths and ask for what I need.

So, for example, when I go to work this Monday, I’m going to ask that someone turn off the speaker above my head while I’m working on the jewelry. I’m not going to say that I’m sorry to trouble them, and I’m not going to feel small and scared. I’m just going to say that I’m very sensitive, and that everything comes into my senses at the same volume and with the same intensity, both of which are very high. I’m going to say that listening to the music, hearing people talking, and trying to concentrate on the jewelry is more than I can do at once. In other words, I’m going to ask for the staff’s assistance in making the environment work for me.  

This is who I am. I get to be here, too. I don’t have to pretend to be neuro-typical anymore. I just have to be myself, the way I was made. It’s the most important thing I’ll ever do. And like most important things, it’s also the most difficult.

© 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 first noticed that my father had trouble with eye contact when I was about ten years old. It was a Sunday, and my grandparents were visiting us. I was practicing a sonata on the piano, and my parents and grandparents had come over to the doorway to listen. I was well aware of their presence, and I felt proud that I had learned the piece so well.

When I was done, I looked over at my family. My mother and my grandparents were looking right at me, applauding and giving me compliments. My father, however, was looking everywhere except at me. He was shifting his stance, too, as though he were uncomfortable. He looked very much like a little boy who had been dropped into our livingroom and couldn’t figure out where he was or how to get home.

Of course, as a child, I took his responses very personally. I interpreted his lack of eye contact to mean that he didn’t care about my music. His shifting around seemed to mean that he was impatient to get away from me. I became very sad and discouraged. How could I reach him? I didn’t know.

Soon after, I saw that my father wasn’t making eye contact at the dinner table. I was excited about something at school and wanted to tell him all about it, but he didn’t look at me or give me any sort of response. It was almost as though he were defending against me. It’s possible that he had always been this way and that I hadn’t noticed it before, but once I saw it, my heart sank. I couldn’t stand feeling so much happiness and enthusiasm without being able to share it with him.

All of this happened 40 years ago, before anyone had the words to talk about what was going on. And so, my relationship with my father deterioriated. For many years, I tried to be different from him in every respect, and I’ve succeeded in many positive ways. But like my father, I have my own problems with eye contact. I can hold eye contact better than he could, but I never know how long I’m supposed to do it. And while I’m looking into someone’s eyes, it’s nearly impossible for me to articulate my thoughts or to listen to what the person is saying. I have to look away in order to think and to speak.

There is also something about being seen, about being held in someone’s gaze, that is deeply upsetting to me. Perhaps it’s the legacy of trying to appear normal all my life. The anxiety that someone might actually see my strange, awkward, eccentric self has always been profound. So I look away, thinking that somehow, I will become opaque—very much like a child who closes her eyes and thinks that other people can’t see her. Do I really think I’m hiding by looking at the ground? Perhaps. On the other hand, I am always upset when people can’t see me properly—when they think badly of me for no reason, or when they ignore me altogether. I’ve lived most of my life in this strange double bind—wanting desperately to be seen properly and wanting desperately to be invisible.

Unlike my father, I have no trouble holding eye contact with close family members. I can look into my husband’s eyes and into my daughter’s eyes, and listen to them at the same time. But I shy away from eye contact with most people, rather in the same way that I shy away from looking directly into the sun. I’m not just afraid of being seen. In fact, as I come out to more and more people about being an Aspie, I feel much less afraid of being seen.

What really terrifies me, more than anything else, is to look into the eyes of another human being and see that person’s soul. When I look into a person’s eyes, I have such a profound empathic experience of the person that it’s overwhelming. It’s not that I read the person’s individual emotions. It’s as though the person’s whole being is coming at me.

I’d never given this kind of experience much thought until I read a book called Love, Loss and Healing: A Woman’s Guide to Transforming Grief by Susan T. De Lone. The author had lost her husband of 27 years to cancer, and she wrote about watching him die. When he passed, she felt his soul all around her in his hospital room. His soul was so vast that it filled the room, but could not be contained by it. She saw in that moment how difficult it is to have a vast soul in a limited, human body.

This vastness of soul comes at me through a person’s eyes. It is never the vastness of a generic, undifferentiated soul but of a unique, complex, multi-layered soul with pain, with fear, with love, with everything that it means to be a human being. To look into a person’s eyes for a few seconds, and then to look elsewhere, is often the best I can do. Averting my eyes is my neurological, spiritual, and psychological shield.

I envy people who don’t need this kind of shield. Sometimes, I’d like to do what others do so easily. But I don’t consider my way of seeing to be a deficit. It’s simply a different kind of sight. In the social world, it doesn’t do me much good, but the universe, like the soul, is vast. I try to keep my eye on the big picture. It helps to keep things in perspective.

© 2009 by Rachel Cohen-Rottenberg