Journeys with Autism

Less than three miles from my house, there is a non-profit, year-round day school for autistic people between the ages of 11 and 22. The school provides academic classes, work on social and emotional development, attention to fitness and sensory needs, and vocational training and entrepreneurship opportunities. The ratio of teachers to students is 1:4, and each student has an aide.

I contacted the school a couple of weeks ago, because it sounds like a place I might like to volunteer. I told them a little bit about myself—my recent Asperger’s diagnosis, my old career, my new life—and I asked whether they would be interested in my helping out. Within a couple of hours, I got a very enthusiastic response from a staff person named Stephanie. Her email began with the words “Wow! This is fantastic!” 

After some emailing back and forth, I’m in the process of figuring out the best time to go and see the school environment in action. I told Stephanie that I will need to take into consideration my auditory and visual sensitivities. Her reply, and I quote: “We’re flexible and completely willing to meet your needs.” Wow. She sent me a brochure with information about their summer program so that I could decide when to come.

So far, very good.  I am excited about the possibilities. I would be able to do some community service work with autistic people in an environment that takes our way of being into account. Being able to go somewhere and just be around other autistic people would be great for me, and being able to help support the kids coming up would give me a lot of satisfaction.

However, I’m noticing how anxious I feel over actually going there and meeting the staff. I generally get pretty anxious when I have to go to a new place and meet new people. That’s not unusual. What’s really got me going today is the fact that I can go there and be my autistic self. Arghh! Go somewhere and be autistic? I can almost feel the pathways in my brain twisting and turning to comprehend this new reality.

The anxiety is showing me the roots of my impatience. I feel so much anxiety that I want to fly over all the steps I need to take before I know whether volunteering there will work. I just want to plunk myself into a role there, have everyone be happy, and get started. The anxiety about having to go through all the steps on the way is really tough for me. It always is, but this time, precisely because I do not have to pretend to be neuro-typical, it feels even tougher. I’m so used to hiding all my autistic traits when I’m out in the world that it feels really hard to remember that I won’t have to. It feels backwards.

So, instead of being anxious and impatient, I figured that I should just take the bull by the horns and write the steps down. Then, I’ll see how harmless they really are. I hope.

1. Peruse the brochure and choose a day and time to go to the school. Send an email to Stephanie, and see whether that day and time will work for the staff.

2. The night before I go, try to get some sleep. (Okay, who am I kidding? I probably won’t sleep much.)

3. The day I go, I’ll be tired and anxious, but that will be okay. (Really? Truly?)

4. Meet with one or two staff people.

5. Spend some time in one of the classes, observing (or possibly participating in) an activity with the students.

6. Take careful note of how the environment is affecting me.

7. Talk with staff about their thoughts for how I might help out, including what days and times are best for them.

8. Go home and think about it a bunch.

9. Decide that it will work.

10. Start volunteering there.

© 2009 by Rachel Cohen-Rottenberg

A few weeks back, I had an email conversation with a friend about the difficulties of waiting—specifically, about waiting all day long for late-afternoon or evening appointments. 

Today, I’m struggling with this difficulty, and it’s my own doing. I scheduled a 4:30 appointment with my therapist this afternoon. It’s the only one she had available today, and since my husband can drive me there, I took it.

Silly me. When will I learn? The entire day leading up to an appointment feels so compressed. In order to get anything done, I have to think backward from the scheduled time: “Let’s see, if the appointment is at 4:30, I have to leave here by 3:45. That means, I’ll need to get my workout done by 3:00, so that I can take a shower before leaving…” I’d like to go on, but my head feels like it’s about to blow a circuit. I have enough difficulty sequencing tasks in a forward direction. Trying to sequence them backwards makes me want to weep.

In any case, while I’m waiting, I feel like my engine is revving, but I’m not going anywhere. It’s very difficult for me to do anything when I’m waiting. Even on a day like today, when I’ve cleared my schedule, the anxiety has been steadily increasing with every passing hour. As my OT would say, my nervous system is trying desperately to get my attention and defend itself. It’s as though I’m having the following internal conversation:

Me: “Why am I getting so agitated?”

My nervous system: “Excusez-moi? Do the letters AS mean anything to you? How about SPD? Ring a bell, any of it?”

Me: “Look, I scheduled an appointment for 4:30. With my therapist. What’s the big deal? It’s not like I’m asking you to do ten different things today. One. Just one.”

My nervous system: “Okay, look, it’s hard being with other people.”

Me: “Why? What’s wrong with other people? What are you, a goddamned misanthrope?”

My nervous system: “Ooh, wow, a big word. I’m in awe. You know, if you take that tone with me, I’m just going to get more agitated.”

Me: “Okay, okay. For goodness sake, just answer the question. Please.”

My nervous system: ”What question?”

Me: “What’s wrong with other people?”

My nervous system: “It’s not that anything is wrong with other people. They’re perfectly lovely. You’re perfectly lovely. Everyone’s perfectly lovely. Okay?”

Me: ”So, if we’re all so lovely, what’s the big deal?”

My nervous system: ”In case you’ve forgotten our conversation of, let’s see, the last five decades, I’ll tell you what the big deal is. Other people are a lot of work for me, especially if I have to get in a car to see them, or they’re in some unpredictable environment where someone might be talking too loudly, or….I don’t even want to THINK about all the stuff that could happen.”

Me: “Oh, come on, you’re getting overdramatic. We live in crunchy-granola-ville, for crying out loud. The worst thing that could happen is that we’ll meet someone singing Kumbaya.”

My nervous system: “Are you not listening? It’s not about whether the people are nice. It’s about dealing with people. Period.”

Me: “Well, you used to be able to deal with people. All day, every day.”

My nervous system: “Oh, G-d, not this argument again.”

Me: “What argument?”

My nervous system: “You know very well what argument. The one in which you want to know why I can’t keep breaking my ass for you constantly, like I used to.”

Me: “Oh, right, that argument. Well, why can’t you…Sorry.”

My nervous system: “Apology accepted.”

Me: “So, what’s so hard about being around people? Everyone ELSE does it.”

My nervous system: “Look, I’m not everyone else. I’m me. And for me, it’s work. Work, work, work. And then some more work. And then even more work. And oh, I forgot. Some more work after that, too.”

Me: “Yeah, but why is waiting so hard? Why can’t you just get agitated when we get to the appointment?”

My nervous system: “Look, dealing with one person in the outside world is work. And now, because you thought absolutely NOTHING of what I might need, you’re going to make me wait ALL DAY LONG, in suspense, getting ready for the fact that going out and seeing another person is going to be a lot of work. Gee, thanks. I only allow you to think, breathe, walk, talk, and eat. But don’t worry about me. I’m not all that important.”

Me: “Enough with the guilt trip. And calm down. Take a breath. Be here now.”

My nervous system: “Who do you think I am, the Dalai Lama? I’m not. The Dalai Lama is a bodhisattva, and G-d bless him, but I am an Aspie nervous system, and I WOULD LIKE A LITTLE RESPECT.”

Me: “Why are you shouting at me?”

My nervous system: “I try to ask nicely. I really do. But then, after all the many, many conversations we’ve had, you still insist on scheduling late-afternoon appointments, and it’s hard on me. I’m shouting to get your attention.”

Me: “Sorry. I’m doing the best I can.”

My nervous system: “Me, too.”

Me: “Friends?”

My nervous system: “I’ll believe it when I see it.”

I’d better go do my workout and get my nervous system to calm down. After all, we’re working on our relationship, and I need to do my part.

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

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

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

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

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

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

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

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

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

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

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

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

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

But there wasn’t any tomorrow. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

I 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

Thank you all for your honest and insightful words in response to my last post. I feel so supported and appreciated. In the world of autistic people, I can finally feel comfortable being myself. I can speak from my heart, I can say what’s on my mind, and I can know that it will be okay. After a lifetime of anxiety about saying the right things and wondering whether I’ll ever be accepted by a group of people, your acceptance and appreciation of me is a great gift.

In the process of reflecting on all of your responses, I’ve come upon a new realization. If I feel at home with myself and accept myself as I am, then I can continue to feel at home with other people who experience the world as I do. The key to developing a new sense of belonging is to cultivate a new sense of self-acceptance. As LizzieK8 pointed out so succinctly, “Accepting who you are is really the next step.”

For most of my life, the road to self-acceptance has been part of my spiritual path. I’ve done some good, useful work on this path, but I’ve never felt sufficiently grounded. In these past few days, however, my spiritual path has come down to earth and into my body. Walking that path means paying attention to the minute particulars of what I can do from day to day, understanding the work that I can’t live without, and getting a clearer sense of the kind of help and support I need.

The hardest obstacles on the path are all the negative connotations of the word autism. Like most people growing up in the larger culture, I was told long ago that autism is a scary word. The word suggests so many things that I now know to be false: that I don’t have feelings, that I’m not quite whole, that I’m “less than” everyone else, and that my family is to be admired (and pitied) for putting up with me. I know that this nonsense is all untrue, but undoing it is very hard work. Once a lie comes in and sets up house, it takes a lot of doing to root it out.

So, I’ve been looking at the internalized negative messages about my autistic traits, and I’ve started rewriting those messages. My goal is to empty them of their power to grind me down. Here are a few examples of the challenges that I’ve struggled with over the past few days, and the steps I’ve taken toward accepting who I am:

1. I cannot think clearly when other people are around, especially if I think that people are going to interrupt me.

It’s not just that I need time alone to write my blog posts. It’s that I need time alone to write a grocery list. I have a poor working memory and difficulty sequencing tasks. Both challenges are common and significant aspects of AS. 

Regarding grocery lists, I have a strategy for making sure that each member of my family gets what he or she needs. I’ve made two very complete lists of all of our staples. One list is for my daughter’s food preferences, and the other list includes the edibles that my husband and I like to have around. I take the lists, look around the kitchen, see what we need, and write it down. Even by myself, it’s difficult not to get distracted by a hundred other things, but if someone else is in the room, it’s like running a sensory obstacle course. As Saja put it, “It’s like my head is filled with sand or buzzing flies or something, until I’m all alone, and then my thoughts can flow.”

In the past, I’ve figured that I was just plain stupid, hopelessly broken, extremely lazy, or not working hard enough on my therapy. Now, I realize that I have a Pervasive Developmental Disorder, otherwise known as a high-functioning form of autism called Asperger’s Syndrome. Doesn’t that sound ever so much better?! Don’t I feel just wonderful now?! The negative connotations of all these words send up some very uplifting and useful thoughts: Not me. I’m smart. I’m not one of those people.

Well, I reply, I am smart, and those people are my people, thank you very much. My people show care and concern when one of us feels like she’s sinking. My people use their minds to try and figure out solutions to the problems we share. My people say things so straightforwardly that it shocks the less autistically wired. My people are not broken, not crazy, not heartless, and not stupid. My people are…just like me.

So…where was I? Oh, right, the grocery list. When I was writing down the grocery list this Friday, my husband started to ask me about something. I was tempted to try and think about two things at once, because, after all, I’m smart. But I didn’t. Instead, I had the presence of mind to say, in a very straightforward and friendly voice, “I can’t answer a question and do the food list at the same time.”

Simple. No judgment. Just a statement about what’s true. And my husband’s response was, “Oh, right, I forgot.”

What a relief. The more I can articulate what’s going on in a neutral way, the better I do at accepting it as a part of me.

2. I have developed a complete aversion to sweeping the floors and cleaning the bathrooms.

I’ve been doing these tasks all my adult life, and it’s been making me progressively more irritable, grouchy, and generally unpleasant. I thought I was just lazy and immature.

I’m not. Having an AS and an SPD diagnosis, I finally understand the core of the problem. It’s called severe gravitational insecurity. That’s what my OT calls it, and she has a license and everything. The problem is that when I start to move my head through space, I can’t tell where the ground is, so I don’t have a feeling of stability. Moving my head anywhere except in a line with the rest of my body is extremely disorienting.

Sweeping means that I have to bend down to look under the bed. It entails moving furniture and bending over to see what’s behind it. Cleaning the bathroom means bending down into the tub. No wonder I get grouchy and irritable. It’s my nervous system’s way of defending itself. It’s as though my nervous system is saying, ”Um, whoa, excuse me, please don’t do that thing you do with your head in mid-air and a sponge in your hand.”

So, given that my nervous system and I are trying to be friends, I’m about to do something I said I would never do: I am going to find someone to clean my house.

Trust me, this is big. I grew up in a neighborhood in which many people hired housekeepers, and my mother was very proud of the fact that she cleaned her own house. I’ve inherited that pride, and I’ve become a reverse snob about it. But I really have to let go on this one. My husband did the cleaning on Friday, but that just can’t go on indefinitely. He’s 64 and perfectly healthy, but he’s not getting any younger, and I don’t want him shouldering all these responsibilities. Since I’m dealing with an actual, real-life disability, we need to start getting used to the idea that we need assistance. We need to start calling in support now.

3. I’m about at my wit’s end with auditory overload.

I feel so crowded and so overstimulated by sound that my nervous system is regularly going haywire. It happens everywhere outside my house, especially now that people are spending more time outdoors. And at the store, there is a music speaker directly above the jewelry case where I work. At first, I’m rockin’ to the music, but pretty soon, it’s enough to make me weep.

So, given my acceptance of the fact is that I’m autistic and that sound is really hard for me, I’m considering wearing earplugs when I’m out in the world. Yes, earplugs. This weird sister just got a little weirder. I’ll still be able to hear enough to know whether someone wants to speak to me, and if they do, I’ll take out one of the earplugs and listen. I mean, what’s worse—someone thinking I’m odd, or my head feeling like it’s going to explode? Gee, let me see…

I’ll let you know how it goes.

4. I feel really awful and very insufficient when my husband picks up the slack for me.

Luckily, I’m beginning to realize why. Read carefully, because it’s weird: I actually think, and I am not lying, that basic tasks are as difficult for him as they are for me.

Of course, they aren’t. He has his limits, but going to the grocery store and chatting it up with people is fun for him. And he likes cooking, too.

So why do I share Saja’s experience of having such a loving, sensitive, supportive husband that it makes me want to weep? It’s because I’m used to driving myself relentlessly in my quest to be “normal,” all the while denying how much work it takes to navigate through the sensory world. Over the course of my life, I haven’t been as loving, or as sensitive, or as supportive toward myself as I’d like to think.

And then, one day, out of the clear blue sky, my husband comes along and says, “I love you just as you are, and I can help you take care of things,” and it just doesn’t compute. At all. Fortunately, I’m learning that it doesn’t have to compute. I just have to stand there and accept that my husband is actually speaking the truth.

After all, as one reader said to me, neuro-typical people who love, respect, and support their Aspie spouses and children have the same difficulties with belonging as we do. Because families with autistic people are so different from what most people consider normative, our neuro-typical loved ones are left standing apart in the larger world. They support us in ways that ordinary people can’t fathom. They have patience about things that other people consider impossible—like having a spouse or a child who has meltdowns. They try to understand our challenges, they know how hard we work every day, and in the best of times, they don’t expect us to be “normal.” Lots of them don’t even think that something called “normal” exists. And so, they don’t fit squarely in the NT camp, and they don’t fit squarely in the AS camp, either.

But I always feel that they are an integral part of who we are. They’ve freely consented to come with us on this journey. They’ve thrown in their lot with us. They belong here, too.

© 2009 by Rachel Cohen-Rottenberg

What’s next? I have no idea. I’d hoped to say something comforting and insightful about where to go from here, but I’m full of profound sadness, loneliness, and doubt today.

I’m looking back at all the times that I thought, “This time, everything will be okay. I’ll just change my house/neighborhood/community/job/synagogue/therapist/diet/exercise program, and I’ll fit in. I’ll belong. Everything will be all right. All this struggle will be done.”

Onward and upward and all that jazz. Living in the land of hope, where my therapist told me that I was going to soar. She gave me so much hope. I can’t blame her. I imagine it’s worked a time or two for other people.

But it didn’t work for me. And in these last few days, I’ve realized that I’ve spent my whole life trying to be an NT, and that working like crazy at my therapy was part of it. Now that I can’t be an NT, what do I do? I only know what I can’t do. I can’t go to my daughter’s concert tonight. I’d give almost anything to leave the sensory overload at home and be there. She and her best friend are not just in the chorus; they’ll be in front, singing their hearts out.

But I can’t go. The sensory overload would happen in the first five minutes. My stepson is taking a video of the whole concert to distribute to anyone who wants it. So, I’ll get one of those and at least get to see the performance that way, but…still. You know.

Last year at this time, we had just moved to Vermont, and I had all kinds of plans. I was getting dressed up for work, going to the movies, going out for dinner, chatting with the neighbors, and feeling like I was finally standing in the sunshine. I thought that the hard times were over, at least for a little while.

But it didn’t work out that way. Six months after we moved here, I got the AS diagnosis, and its implications are all hitting me very hard right now.

I feel so bad for Bob. He didn’t sign up for this ASD stuff. He didn’t sign up for a wife who goes shopping at the co-op for a half hour and then needs to lie down under 30 pounds of weighted blankets for the rest of the afternoon. He didn’t sign up for a wife who is afraid to try going to the movies anymore because the sensory overload of the sound, the visuals, and the people is so difficult to bear.

He says it’s all fine, that he doesn’t think anything is wrong with me, that he loves me, that he’s so happy with me, and that I do so much for him, even though I can’t see it. He says that he did sign up for all of this, for every bit of it, because that’s what marriage is about.

I know it’s true. And I know that if the roles were reversed, I’d feel just as he does.

But, still, it wasn’t supposed to be like this.

So, where do I go from here? Through the fog and the haze, I can see that there are situations that give me some sense of belonging, although with each of them, I feel very limited in what I can do:

1. Living in our neighborhood.

The positives: I like living on our little one-block road with very friendly, kind neighbors who respect one another’s privacy and don’t play loud music. That soothes me. It’s reassuring that I can have some nice conversations, so long as it’s between me and one other person.

What’s not so great: When a neighbor comes over to chat with both Bob and me, and I can’t keep up. Then, I don’t feel soothed. I feel sad. I watch the whole interaction take place, and I can see that the other two people are connecting in some way I can’t grasp, and that I’m out of sync. It feels truly and painfully awful, like I’m in some sort of invisible time capsule that no one can see but me.

2. Going to my volunteer job

The positives: Everyone seems to be very accepting of quirky people, and I’m becoming quirkier with every new day. People genuinely seem to like me there, even though I feel completely “other” all the time.

What’s not so great: Last year, I went there looking for friends, and somewhere down the line, maybe even paid employment. Now, I just go there, do my two-hour shift, try to be friendly and helpful, feel overloaded, come home, lie down under weighted blankets, and hope like hell that my nervous system calms down sometime before the weekend.

3. Connecting with people online

The positives: I love writing this blog, reading people’s comments, getting emails from readers, and responding to them. I also love reading other people’s blogs. I have made my first Aspie friends in the past year, people with whom I correspond by email on a regular basis.

What’s not so great: It all feels so…virtual. Except for a few photos, I don’t know what anyone looks like. And I definitely don’t know what people sound like. Although my visual and auditory systems can get overwhelmed, they also help me feel reassured, especially when it comes to belonging. I’m an artist and a singer. I love visuals and sound. They just have to be the right ones.

So, I’m left having to take a very, very big leap of faith that there are people out there:

a) whom I’ve never met in person,
b) whose names, in some cases, I don’t know,
c) who feel just as I do,
d) who accept me for who I am (whoever that is), and
e) who comprise an online autistic community, to which I belong.

Do I have that right? Is that what everyone else is attempting to do? Help me out here. This requires a huge leap of faith for me. I’m not good at those. (It’s the feeling of weightlessness that comes with the leap. So often, it’s been followed by a crash.)

And of course, as I write this, I’m thinking, “I hope these people don’t think I’m completely nuts. Should I even say all this?”

Yes, I should say all this. After all, it’s real.

I’m not the only one who feels these things—am I?

© 2009 by Rachel Cohen-Rottenberg

As I reflect on my search for belonging, I notice that in very different situations, I’ve made many of the same mistakes. And so, in good Aspie fashion, I’ve decided to make a list of these mistakes, along with some examples, so as to impress them more deeply into my consciousness.

In my ongoing quest for belonging, here are the top five mistakes I would like to avoid:

1. Confusing competence with intelligence, and intelligence with my worth as a human being.

Untangling my self-worth from my intelligence is my greatest struggle. Whenever I find myself unable to do something, especially something that I consider simple, I think I’m being stupid, and then I watch my self-worth start to decline. This pattern has become especially clear since the Asperger’s diagnosis, as I’ve become aware of basic things I cannot do very easily.

Example: A couple of weeks ago, I went to the grocery store to get some food that my daughter had requested. On my list were some yogurt smoothie drinks that she really likes. So, I went around the store, putting things in my basket, until I got to the yogurt smoothies. There were five kinds, and I chose one of each. Easy, right?

But then, I realized that I ought to look at the pull dates, to make sure that the smoothies would still be good when she got back from her dad’s house. Each flavor had a different pull date, so I decided to replace the bottles with earlier pull dates with bottles with later ones. I’d take one flavor from my basket and put it up on the shelf, but then I wouldn’t remember which flavor to take from the shelf and put in my basket. I’d look back down in my basket to see what I already had, but by the time I looked back up at the shelf, I’d have forgotten. I had to go through this routine about half a dozen times before I got it all figured out, and I felt like I was in slow, disoriented motion the whole time.

Now, I know that what happened has nothing to do with intelligence at all. Nothing. It was a combination of gravitational insecurity, sensory overload, and a poor working memory.

I know about all of these challenges, and that they are physical. I also know that I’m not making them up or exaggerating them, because my OT actually wrote about them in her sensory assessment report. So I have a witness. A knowledgeable and objective witness, no less.

But it all makes me feel very stupid, nonetheless. I suppose I’m just feeling humbled, but somehow, feeling stupid is easier.

I’ve got to get over this one. Soon.

2. Playing competitive intellectual games in order to prove my intelligence.

Example: 3 ½ years “succeeding” in a very competitive Ph.D. program. 

The good news is that I’m too old to put myself through it anymore. When my husband and I went to a weekend conference at Hebrew College a few years ago, I couldn’t even begin to keep up with the intellectual competition. I tried, reached nothing like the majestic heights of yesteryear, and had a migraine nearly the whole time. It was so miserable that I decided to never, ever, do anything like that again.

3. Ignoring my instincts and past experience when they indicate that a group is not going to work for me.

I may have very poor social intuition, but my basic instincts are excellent. I know when a situation is not going to work, and I ignore my instincts at my peril.

Example: I should have known that my first synagogue membership would not last long when I came into the gathering in the social hall after services, and it looked like a cocktail party. I wondered why in G-d’s name I was hanging out with people who looked like my mother’s friends. The fact that the question did not drive me from the place immediately is an indication of how desperately I wanted to be there.

4. Trying to do everything “right” so that I will be accepted.

Story of my life. Story of my entire life.

Example: The synagogue experience described in my last post. This example is only one small piece of a pattern I have perpetuated for as long as I can remember.

But I’ve finally figured out why I keep trying to get it “right,” and why it will never give me what I’m looking for. Simply put, I’ve spent my entire life trying to act like an NT—all day, every day, and in my dreams, too. That’s what I really mean by doing everything “right.” I wouldn’t have defined it that way before the Asperger’s diagnosis, but it’s very clear to me now.

There is nothing wrong with acting like an NT full-time, if you actually happen to be an NT full-time, but for this Aspie, it’s been a fruitless endeavor. It would have been all right if I had tried to act like an NT only at work, since we all have to make a living at one time or another, but I went to extremes with it. Of course, I didn’t know better, but now that I do, I really must find a new hobby.

5. Idealizing a group and jumping in with both feet, only to end up angered and burned out by the injustice that inevitably arises.

I’ve made this mistake with just about every group I’ve every joined. Ironically, I end up leaving because I see things happening that violate the very principles on which the whole group is based.

Example: My unhappy experience with the woman at AANE. When I joined AANE, I thought, “Wow, what a great organization! They’ll really want me to volunteer up here in Vermont! It’s an AS organization, so why wouldn’t they? There’s even a place on their membership application where they ask for volunteers!”

Then, when I found myself treated poorly and my offer being ignored, I entered what some people like to call “reality.”

Last week, I went around and around in my head, trying to decide whether to email the director of adult services about what had happened and ask for her help. I ultimately spent an hour writing a good, direct, concise email.

And then, I took a deep breath, centered myself, and deleted every word. I deleted it because I have been there before, so many times. I have sent so many letters and so many emails to so many people in so many organizations, describing so many things that were so clearly wrong. And the result has always been one of the following:

a) No response at all.

b) A “circle the wagons” response, in which the person begins with one of the following phrases:

“I’m sure she didn’t mean anything by it…“
“I’m sure you misunderstood…”
“I’m sure you’ll understand our position…”
”I’m sorry you feel that way, but…”

c) A response that seems to promise hope, but with no follow-through. This response is the worst for me, because I always start out feeling optimistic, and I always end up feeling unbelievably naive.

What I’ve figured out, after all these years, is that I cannot talk to neuro-typical people in an organization when they, or one of their colleagues, has made a wrong turn. I might someday find someone who can deal with me constructively, but it’s not worth the effort anymore. If the wrong turn involves the loss of a reasonable sum of money, or if it means that my daughter will be unjustly treated, I’ll make an exception, and when I can’t take it anymore, I’ll hand the phone to my husband. But other than that, I’m done.

And here’s why: In every organization, there are all sorts of social, nonverbal, pecking-order assumptions about treating certain individuals with deference, about defending the organization, and about a number of other concerns that I just can’t see and don’t understand. So, a person I contact at any organization will very likely defend someone higher up, come out in defense of the organization, ignore me, or do something else that drives me nuts. It’s happened before.

Enter my Aspie brain, which says that if there’s a problem, all that matters is that it get fixed. It doesn’t matter whether the person who made the mistake has a Ph.D. after his name or struggled through high school. It doesn’t matter what organization he belongs to, what his title is, what neighborhood he came from, what his parents did (or didn’t do), or what plaques he’s got up on his wall. I do not care. I am fiercely democratic. To me, all we have to do is to sit down, hear each other out, get to the bottom of things, and creatively solve the problem.

This is my Aspieness in full bloom. This is the best of who I am. And this is my version of logic. I don’t care for math or numbers, but to me, human life is full of problems begging for solutions, and everything that gets in the way is bullshit. Unfortunately, what I consider bullshit is just basic social reality for most people. Needless to say, sooner or later, a relentless force (me) meets an immoveable object (them), and it’s not a happy experience.

So, given all the givens, if I’m going to find community, it will have to be with a) other autistic people and b) neuro-typical people who treat their autistic friends and family members with love and respect.

And, very happily, I’ve begun to create such a community around myself, simply by starting this blog. In my next post, I’ll spend some more time on this subject.

© 2009 by Rachel Cohen-Rottenberg

On a good day (and I have my share), having AS is an interesting way of engaging the world. It makes me feel like a cool, eccentric, artsy, non-conformist person. It’s even necessary to the health of the planet, because it provides diversity in the ways that human beings see the world and in the gifts they bring to it. Hurrah for AS.

On a bad day, AS is a neurological disability so limiting that I wonder when this strange, unexpected dream will be over, and I’ll wake up again and be the person that everyone has always expected me to be.

Lately, I’ve been feeling very disabled. Nothing has really changed about the effects of the AS and SPD. I’ve just reached another level of opening my eyes and seeing how disabling they can be. Perhaps all the evidence has been coming in for awhile, and I finally noticed it. Or perhaps my desire to see AS in a positive light has kept me from looking at the negatives.

Oops. I just said negatives. Just writing that feels like blasphemy. But I have to face how things really feel, right now, not how they felt last year, not how they might feel tomorrow, and not how I might wish them to be at some undetermined point in the future.

Several things have come together to bring me to this moment:

1. My Deer in the Headlights experience of last Monday. I didn’t get over it till the end of the week. Tuesday was a total failure-to-launch day. I went to work on Thursday, and I was so disoriented and tired that doing simple tasks felt overwhelming.

However, as a result of posting about being in the eye of the monologue, I got some great suggestions on how to handle people who talk at me, and I’ve already put one suggestion to use. Someone wanted to talk about something last week, and my nervous system just yelled “No!” Fortunately, my mouth was still working at that moment, and I said, very politely, “I really can’t. I’m getting ready for work.” It worked! And it was the truth. I did have to get ready for work. Which leads me to the next issue.

2. Always wanting to be honest. This is a big Aspie thing. I think about all the ideas for how to extricate myself from people who talk at me, and I find myself rebelling against all the polite things I can say. I just want to be honest. The dialogue in my head goes something like this:

Okay. So I can say that I have to use the bathroom, or pick up my kid, or get ready for work. Who can argue with that?

But can I really say out loud, “I have Asperger’s Syndrome, a high-functioning form of autism” to someone in a town this small? It’s a friendly town, but still.

Which leads me to the next issue.

3. Hiding.

Okay, so what’s the problem with saying I have AS? Or that I have a neurological disability? Or that I’m autistic, plain and simple, without qualifiers? Well, the injured, confused, out-of-sync kid in me says, “You can’t say that. Everybody will hate you. They’ll think you’re weird. They’ll think you have no feelings. They’ll think you’re damaged goods. They won’t get it. At all.”

But I don’t think that’s it. I really don’t. I’ve been talking it over with the husband. He reminded me that anyone who freaks out and wants nothing to do with me is actually doing me a favor, because such a person would never be a friend anyway. Good point, husband.

So what’s the problem? I’m used to hiding. I’m used to putting on my “I’m perfectly functional, thank you very much” face and performing my “I’m normal” act while attempting to outsmart the world. I am so sick of it that even the most hyperlexic Aspie couldn’t find enough words to describe how old this has gotten.

I just want to be myself, dammit. How hard is that? I just have to come out of hiding and say, “Hi, everybody. It’s me!”

4. Yeah, but who’s me?

5. Great (and failed) expectations

Okay, so here’s who I was supposed to be: a straight-A student (check), a classical pianist (check, but that ended at the age of 18, when I couldn’t take the stress of putting on a face and performing…hmmm…I see a pattern here…), an Ivy League graduate (except that I left after two years because I couldn’t hold a pencil without shaking), a well-respected English professor (except that I left with my Master’s degree and a PTSD diagnosis), someone important in the world (like my high-school friends and extended family members who are now famous musicians, or famous writers, or famous doctors, or famous social science researchers), a rabbi or a cantor (except that people overwhelm me and I get stage fright when I have to sing in front of them), and a perfectly dutiful daughter (enough said).

I know I’ve done some great things. I’m a good mom, I used to have a very good career, I have a wonderful husband, and I love where I live. I’m not complaining about any of that, and I’m not giving it less than its due. In fact, sometimes I focus on all my blessings so intensely that when the other side of who I am grabs my attention, I don’t recognize myself and I rebel against what I see. Here’s the other side of who I am:

a) I can’t do more than one activity out in the world in a single day. Example: On Thursday, we nearly ran out of bananas, one of my staple foods. My husband had said he might pick some up on his way home, if he had time before a friend came over. He got back without the bananas. I started to get upset with him, but then I finally said, “I’m not upset with you. I’m upset that I can’t go to work for two hours and then go to the f#*&ing grocery store and buy some f#*&ing bananas in the same f#*&ing afternoon.”

Which leads me to the next issue.

b) I find myself lacking in essential survival skills, such as the ability to go grocery shopping on a regular basis. My husband does it, and he enjoys it, but I am going to make myself go grocery shopping each Wednesday if it’s the last thing I do for the day (and it very well might be). We had an extended discussion about this issue the other day, and I got to the point of saying, “I just need the dignity of being able to get my own food.”

I used to be in a Ph.D. program and now I’m working on the dignity of getting my own food? And did I mention that I don’t cook, either? My husband does that. I clean the house, I keep it from getting cluttered, I do all the dishes, I make sure my daughter’s laundry gets done, and I work in the flower and vegetable gardens. All that’s cool. I just wish I could do some other things that other people find so simple.

c) I can’t work. I used to work full-time at a pretty high-powered job. Now two hours arranging jewelry and housewares wipes me out. How did this happen? A friend of mine thinks that the PTSD finally caught up with me. I think that it’s a question of aging. Apparently, sensory integration starts to get harder for everyone as we age, so for an aging Aspie, it’s especially pronounced. It’s probably some combination of PTSD, AS, SPD, and the fact that I’ve worked against it all pretty much non-stop for most of my life.

So, there you have it. Wonderful, loving, confused, disabled me. I am constantly struggling to accept myself just as I am, on any given day.

I feel embarrassed to say it, but I feel a lot of shame about all the things I can’t do. Why should I feel such shame at having disabilities? I mean, if I couldn’t walk, would I feel like this? Perhaps I would. Perhaps I live in a culture that teaches me to be ashamed of anything atypical, and perhaps I’m no more immune from that pressure than the next person.

I’m having a hard time. I know it will pass. It feels good to be able to talk about it.

© 2009 by Rachel Cohen-Rottenberg