Archive for October 26, 2009

Recover from Autism? Why?

October 26, 2009 Rachel Spectrum Pride

Over the past year, I’ve stumbled upon a number of blogs by parents who talk about their children “recovering” from autism. I’m not entirely sure what “recovery” means in this context, but every time I see the word, I wince.

I know what “recovery” does not mean for these parents. It is not a euphemism for “cure.”  I am sure of it. These parents are not looking to cure their children of autism. They know better. They know that an autistic person cannot be changed into a neuro-typical person. They love their children for who they are, and like all good parents, they are concerned with how their children will navigate the world and survive as adults. Up to that point, I completely relate to their concerns. What parent of a teenager wouldn’t?

It’s when people start talking about “building skills” and “playing to their children’s strengths” that the word “recovery” begins appearing, and I start feeling faint.

To put it bluntly, I’m offended by the whole idea that one can or should “recover” from autism. I’m offended by the implication that being autistic is a negative condition. After all, one speaks of recovering from cancer, or the flu, or a traumatic childhood. One can even be in a perpetual process of recovery from drug addiction or alcoholism. No (sober) person would argue against recovery from any of these conditions, because to most (sober) people, each of these conditions is a very, very bad thing.

Are there any good conditions from which one might recover? Can one recover from a happy childhood? A low cholesterol level? The ability to run five miles a day uninjured? I don’t think so. The word “recovery” assumes that something bad is happening—that something has been “taken” that must be “recovered.” But what does autism take away, exactly?

I’m not sure. I can make lists upon lists of all the things I can’t do—I can’t go to parties, I can’t make small talk, I can’t follow the thread of a spoken conversation, I can’t be in a crowd of people and think straight—but has anything been taken from me? How can I have been robbed of something I never had in the first place? Maybe I had a dream of being adept at social conversation. Maybe I took on someone else’s expectation that I should be the life of the party. Maybe I bought the whole white, educated, middle-class, American, neuro-typical idea of social success, and maybe I suffer because I’ve spent my life trying to attain it.

But I’m not suffering because of autism. I do not feel robbed by being autistic any more than someone who can’t carry a tune feels robbed of becoming an opera singer. Generally, people who can’t sing don’t dream of taking the stage for “La Traviata.” They don’t attempt to “recover” a voice they never had. Why should autistic people dream of making proper social conversation? What are we supposed to be recovering, exactly? 

I don’t know anymore. All I know is that I feel normal. In fact, all I know is that I am normal. I’m normal for me, just like every other person on the planet.

Of course, I have my challenges. I perceive everything very acutely, so I have to adapt. I can’t clean my house without becoming disoriented, so I need to pay someone to clean it for me. I read other people’s feelings the moment I enter a room, so I have to be deliberate about what situations I’ll walk into, and with whom. I have plenty of challenges. So what do I do about them? I manage them. I work with them, and if they’re really driving me nuts, I work around them. Exactly how does that make me different from anyone else? Everyone has challenges, and everyone has to figure out how to live with them, right?

When I was doing occupational therapy, my OT wanted me to learn how to attend to more than one thing at a time. She said that I should be able to look in one direction, while listening to something coming from a different direction, while engaged in an activity. It’s called multitasking, and it makes me tense just to think about it. In the beginning, however, I did my OT exercises faithfully and gave my OT the benefit of the doubt. Very quickly, though, a little Aspie voice in my head started asking a number of pointed and impertinent questions: “Exactly why are you trying to multitask? Why should you? What’s wrong with concentrating on one thing at a time? After all, isn’t that the purpose of meditation and prayer? To clear one’s head and be able to see what’s right in front of you? Why are you taking on an entirely different set of values? Do you really mind that your body and soul are perfectly happy in a state of acute focus and awareness? Should I go on, or have I made my point?”  

I had no good answers for any of these questions, so I stopped trying to multitask and decided that I liked my autistic hyper-focus just fine.

When it comes down to it, being autistic is just a question of difference. I am an unusual person. I have unusual strengths. I have unusual gifts. I am not like most people you’ll meet. Maybe it’s the Zoloft talking, but I don’t care anymore about being like most people you’ll meet. What’s the fun in that, for goodness sake? I can’t even remember why I once devoted so much energy to it. 

Anything can be an albatross around one’s neck: wealth, poverty, fame, obscurity, and yes, even autism. Autism will be an albatross around my neck if the first words that come into my head every morning are “Oh, no, not THAT again!”  But if I encounter autism with the idea that I’m able to experience life with a sensitivity and a directness that eludes most human beings, then I have a sense of freedom that I have seldom experienced in this life.

As a friend of mine pointed out in a recent email, my life is not a process of recovery. My life is a process of discovery. I can’t look at my life and miss all the things I’ve never had. There is no point to it. I have to discover what it means to be autistic in the here and now. I have to start with who I am, not who I thought I was. I can encounter my life as though I am a perpetual patient with an insurmountable problem called autism, or I can encounter my life as an adventure. Adventures are often arduous, never risk-free, occasionally terrifying, but always interesting.

One needn’t recover from an interesting life. One only has to live it.

© 2009 by Rachel Cohen-Rottenberg

14 comments

An Aspie’s-Eye View of the Afterlife

October 18, 2009 Rachel Aging, Childhood, Spiritual Beliefs

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hey, I’m doing my best.

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

© 2009 by Rachel Cohen-Rottenberg

10 comments

When Our Hopes Get in the Way of Caring for Ourselves

October 11, 2009 Rachel Anxiety, Belonging, Communication, Empathy, Friendship

Virtually all of us have had the experience of letting our hopes blind us to what is actually going on. There are a few spiritually attuned people in this world who, more often than not, respond to exactly what is happening in the moment, but alas, I am not one of them. Like most people, I get derailed by what I want, by what I need, and by what I fear. And, like most people, I suffer the emotional consequences of the clash between my projections of what will happen and the reality on the ground.

As an autistic person, though, I find that the physical impact of letting my expectations get in the way of my better judgment is often profound. Since Thursday, I have been dealing with the physical impact of meeting with my nonverbal autistic counterpart (whom I’ll call Jenny) and the very kind neuro-typical man with whom she shares a home (whom I’ll call Joe). While there were many good things about our visit, I’ve allowed the good things to get in the way of noticing the impact of the difficulties. Since our visit, I’ve had intense and troubling dreams. I’ve woken up every morning with my heart racing. I’ve been on the edge of a migraine almost constantly. Today, I am finally figuring out that something went wrong, but only because my body has been screaming at me for three days to listen up.

So, I’m listening. What I’m learning is that my very tenacious mind ignored a long series of “uh oh” moments that might have helped me care for myself in essential ways.

Here’s how it started: The week before last, when we were planning the visit, Joe and I had some wonderful email conversations. He is a very good person who is trying his best to understand what Jenny needs, and his emails reflected that. However, there were signs that his hopes for the visit were beginning to get the better of him. I could see his very great need for respite and his very great desire for Jenny to find a friend. A little tiny voice inside me said “uh oh,” but I ignored that tiny little voice.

I know exactly why I did it, too: Joe’s need for the situation to work exactly mirrored my own. I very much wanted to make another friend, and I very much wanted to stretch my consciousness of what friendship means altogether. So, over the course of a week, Joe and I built a picture of what we hoped would happen, despite the fact that I had never met Jenny and she had never met me.

In his emails, Joe had described Jenny as being very easy-going and able to go almost anywhere without a lot of difficulty. On the day of the visit, however, Jenny was quite agitated. I could see it the moment they got out of the car. Joe said that she rarely becomes agitated, and that he wasn’t sure why it was happening. I thought perhaps it was just anxiety at being in an unfamiliar environment, but he said that she’d woken up jittery that morning. That little voice in my head said “uh oh” again, but I told it to be quiet and to stop bothering me.

As a result, I quickly overrode my own agitation and tried to be a welcoming host. I invited Joe and Jenny into the house, where Jenny began to move furniture and grab food out of the refrigerator. I was so intent on being welcoming that I discounted how unsafe I was beginning to feel. Jenny isn’t much taller than I am, but she is one strong woman with a very strong will. It was quite difficult to get her to move away from breakable pieces of my daughter’s artwork. The little tiny voice in my head peeped “uh oh” again, but to no avail. I wasn’t listening.

After a short time, we decided to go out for a walk. Jenny and I walked hand in hand, while Joe followed behind. I understood why Joe was there: he wanted to be sure that Jenny felt safe and that I could keep her safe. I kept telling myself that it was fine, but there was that threesome thing happening, and y’all know what happens to me in crowds of three. Uh oh. I was enjoying Jenny and our walk, but I was also getting overloaded.

When we got back, Joe seemed disappointed in the visit. I got the feeling that he’d been hoping that I’d seem more like Jenny, and that I’d be a kind of bridge between them. So, yes, wanting desperately for things to work, I began to articulate the ways in which Jenny and I were alike. At the same time, I was keenly aware of the fact that Joe viewed me as far more neuro-typical than autistic. And yes, that poor little muted voice whispered “Uh oh, and maybe you should keep your mouth shut now?” but there was no point in ruining a perfectly spotless record of ignoring every last signal to take care of myself. So, I tried to explain that I’m autistic and not neuro-typical, which meant that I was talking far too much, for no good reason, and exhausting myself in the process.

Will I ever learn that explaining myself does not work? (I’m aware that the question is beginning to sound rhetorical, and it concerns me.)

In any case, it’s pretty clear to me now why Jenny felt so agitated. Over the course of a week, the expectations that Joe and I were co-creating had become apparent and Jenny had picked up on them. Great expectations of an unknown situation would make anyone agitated, especially an autistic person who is acutely aware of what is going on around her. The fact that she couldn’t verbalize her discomfort doesn’t mean that she didn’t understand what was happening. I’m sure she did. I’m completely agitated by the whole thing three days later, so her agitation should not have come as a surprise to me at all.

Time to let go. This relationship will not work, despite everyone’s best intentions. That little voice whispering “uh oh” has become rather loud, I’m afraid. It’s now shouting things like “Am I not getting through to you?” and “If you keep on with this, you’ll get a full-blown migraine.”

After three days, I can finally say to myself, “Look, it didn’t work for you, and it didn’t work for Jenny. That’s really okay. Other good things are happening, so just keep moving forward.” My head still hurts a bit, but my heart rate is beginning to return to normal.

© 2009 by Rachel Cohen-Rottenberg

4 comments

My Autistic Life is Looking Up

October 5, 2009 Rachel ASL, Belonging, Communication, Community, Friendship, Happiness

You’ve all been so supportive of me in my grief and frustration these past few months, and it’s meant a lot to me. Perhaps I needed to bottom out a few times and cry a lot of tears in order to open up the space for better things to come into my life. I’m not sure. In any case, all kinds of very promising things have been happening for me lately, and I want to share them. While I’m doing my level best not to get attached to outcomes, I can’t help but feel very positive and excited.

Continuing Support from the Deaf Community
Karen, my contact at the school for the Deaf, continues to be an absolute gem. In every interaction, she listens to me, she thinks about solutions, she gives me thoughtful answers, and best of all, she keeps my spirits up. What’s more, she does it all by email. We haven’t even met in person yet!

As an example of what I admire about this woman, I’ll tell you how she responded when I described my auditory and visual difficulties with the ASL class. First, she said that she’d have no problem finding me an ASL tutor, but that she was concerned about the expense. She urged me to look for some kind of program that would help defray the cost, and she gave me a place to start. She also said that if I hit a snag, I should let her know, and she’d help me brainstorm further options.

Next, she suggested that I get specific information about what kind of volunteer help is needed in the school library. With my sensory sensitivities, she said, volunteering in the library might not work. As it turns out, she was right to be concerned. The library tends to be noisy and full of activity. When I told her what I’d found out, and asked whether she could suggest some other options for volunteering, her response was so insightful and so helpful that I could hardly believe my eyes:

“Oh yes I can think of volunteer opportunities for you! The challenge is finding you something where you control your own interactions with others, I think. The newsletter seems like it could be a good one because you’d be able to correspond mainly via email, control your level of input, and get to know people here at the same time. The drawback is that it’s not going to be a good bridge to you learning sign, because I can’t sign yet either. I’ll ask a couple other people for ideas too and get back to you.”

In a follow-up email, she had even more ideas for things I might do, and I’m excited about the possibilities. I won’t write about specifics at the moment; when we get something definite in place, I’ll let you all know how it’s going.

Meeting Up with Another Local Aspie
I’ve been feeling kind of sad about my relationship with my first local Aspie friend. Our sensory sensitivities and social needs are so different that it’s been difficult to figure out a way to hang out. She’s a great person, and we’ve been continuing our friendship by email, but we’re both disappointed that we haven’t come up with a strategy for spending time together.

Meanwhile, I met another Aspie woman in town who saw my article in the local paper and follows my blog. We got together this weekend, and somehow, we just clicked. The verbal pacing was right, our sensory sensitivities seem compatible, and we have some very specific interests in common. So yay! Another promising beginning.

Plans to Meet Up with Yet Another Autistic Person 
In one of the many newsletters that find their way into our house, I saw a classified ad about part-time respite care for a 50-year-old, nonverbal, autistic woman. I wasn’t looking for a job, so I didn’t pay much attention to the ad, except that the words “50-year-old, nonverbal, autistic woman” kept running across my mental screen for weeks. I thought, “You know, I’d like to meet this woman. Why not respond to the ad and say so?”  I wrote an email to the person who had placed the ad, explaining that I’m 51, that I’m autistic, that I navigate the world outside my home as though I’m deaf and nonverbal, and that I was hoping to make a connection with the person he’d mentioned in the ad.

Getting any response seemed like a long shot, since I really wasn’t responding to the purpose of the ad. However, I probably should have bought lottery tickets last week, because taking a long shot paid off in a big way. I got a response, and it was a very enthusiastic one, too. Apparently, the woman herself does not use the computer, but she likes hanging out with friendly people, taking walks, going to the YMCA, and so forth. She is in a shared living situation, and the fellow in whose home she resides clearly likes and respects her. Because I’m not driving anymore, he is willing to drive her up to my house when we meet. So I am very glad to have made this connection.

She and I will be spending a couple of hours together on Thursday. I am looking forward to it very much. I don’t feel any sort of anxiety about this new person, which is very unusual for me. When I meet people for the first time, I’m usually quite nervous. In this case, I suppose it’s the lack of social pressure that’s responsible for the happy sense of calm I feel. She and I aren’t going to talk with words, so I will have to find other ways to listen, to respond, and to communicate. Instead of making me nervous, the prospect sounds absolutely wonderful. It will be a challenge, but a good challenge, and something that I want to be able to do. My natural affinity is to people at the margins (no surprise there), and I’m learning to enjoy my own silence, so I’m feeling very optimistic about our time together.

So many possibilities! Good things are happening.

© 2009 by Rachel Cohen-Rottenberg

7 comments