Journeys with Autism

When I read blogs by the parents of autistic children, I often happen across the puzzle metaphor. It finds its way into statements such as “My autistic daughter is such a puzzle” or “We’re still putting together the pieces of the puzzle that is my son.” I’ve always had a visceral response to the puzzle image to describe autism and autistic people, especially when used in the puzzle-piece logo of the Organization-That-Shall-Not-Be-Named. It’s so offensive on a gut level that I’m having difficulty even beginning to write about it.

A puzzle suggests the idea that there might be some pieces missing. Of course, such an idea is anathema to me, when applied to any person on the planet. The only way in which you could look at a person and see pieces missing is if you begin with a preconceived notion of what a person is supposed to look like. If the person doesn’t fit that preconceived picture in your mind, then you see all kinds of gaps. But if you see the person for himself or herself, and accept the person as a given, without reference to an outside standard, then the picture becomes whole. The person is simply a person, on his or her own terms—nothing more and nothing less.

If you begin with an idea of “normal” that says that a person should be able to speak by the age of two like “normal” children, enjoy the same kinds of activities as “normal” adults, and socialize in a “normal” fashion, you’ve got a seriously complex, preconceived image of what it means to be a whole person. It’s nearly impossible that any atypical person could even begin to approach that image of normal. When we don’t, some of us are told that we’ve got pieces missing. Autistic people are told that we lack empathy, theory of mind, central coherence, and the ability to live as social beings—which, by the by, is all complete and utter bullshit, just in case you were wondering.

So who gets to decide what picture is normal? Other people who have the privilege of defining themselves as normal, that’s who. It’s a nearly invisible privilege for the most part, because it’s everywhere. It’s taken me a long time to see it and, ironically enough, I’ve begun to see it by virtue of what is missing from the language of many of the non-autistic people who talk about us.

Two words are missing from the statement “My autistic daughter is such a puzzle”—two little words that would change that sentence from an expression of privilege to an expression of a personal experience. And those two little words are to me. If someone were to write, “My daughter is such a puzzle to me,” then we’d be getting somewhere. All it takes is the inclusion of the personal pronoun. Of course, there is still that little issue of the puzzle metaphor, which runs the risk of portraying the child as a series of pieces, but at least the source of the fragmented perception would stay where it belongs: in the eye of the beholder. The speaker would be taking responsibility for describing his or her own limited perception rather than an objective fact.

Another example of this limited perception appeared on a recent blog by a parent who said that her autistic child is afraid of things “that just aren’t scary.” She didn’t say “that just aren’t scary to me.” She said, “that just aren’t scary,” as though there were an objective measure of what’s scary. These words imply that somewhere in the far reaches of the universe, there is some ideal called scary, we all know what it is and, if we’re scared of things that don’t measure up to that ideal of scary, something is terribly wrong. Now, I have always assumed that being frightened was a subjective experience, and that an image or a situation that frightened one person might not frighten another. I have never assumed that what went on in my own mind was exactly the same as what went on in other people’s minds. Far from it.

But wait a minute. I remember reading somewhere that being able to understand that other people think differently than I do is called having Theory of Mind (ToM). So, miracle of miracles, I actually have ToM, autistic though I am! And when a non-autistic person can’t imagine why an autistic person might be afraid of something, that non-autistic person seems to lack ToM. I see evidence that non-autistic people lack ToM regarding autistic people all the time. In fact, I see it in the work of “experts” on autism, and yet rarely does anyone call them on it. Usually, the ones who do the calling out are autistic people like me, who by definition don’t understand ToM, so we’re dismissed before we begin.

And once we’re dismissed, people can own the discourse about us and say just about anything they want. Consider the following:

A non-autistic person says that the world of an autistic person is a puzzle. That statement is taken as objective truth by most non-autistic people. In fact, it is irrefutable evidence that the person speaking is “normal” and that the person being spoken of has a “disorder.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Yes, you’re right. Poor thing. He certainly is a puzzle!”

An autistic person says that the world of neurotypical people is a puzzle. That statement is taken as a purely subjective perception by most non-autistic people. In fact, it is irrefutable evidence that the person speaking has a “disorder” and that the people being spoken of are “normal.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Poor thing. He’s so impaired. He just doesn’t understand us.”

Could the arbitrary nature of privilege be any clearer when one set of people has “understanding” when they don’t understand, and the other set of people is “impaired” when they don’t understand? Maybe it’s that I’m autistic, or a born democrat, or hopelessly addicted to fairness, but I find this kind of imbalance deeply disturbing and painfully unjust.

So what do I do when I meet the puzzle metaphor? Well, obviously, I write about it. And yet, the best response to it I’ve seen is a photo on the blog of my friend Elesia Ashkenazy. I’ve taken her lead and created a sign of my own:

If you want one, send me a photo by email and tell me what colors you’d like for the top and bottom, and I’ll make you your own sign. And if you’re comfortable with my publishing it on my blog, let me know. I’d love to have a post filled with signs like this, but only if people are comfortable with their faces being out there for the world to see. I do not “out” people, and I never will.

© 2010 by Rachel Cohen-Rottenberg

In the past week, I’ve read two articles in which mothers of autistic children wrote that their children are “more than their autism.” Something about this assertion has been bothering me, and I want to explore why.

When I read the first article, I thought I’d entirely put my finger on the problem. The writer, a non-autistic mother of two autistic boys, had only negative things to say about autism, and it seemed clear to me that she was saying that her children were more than a collection of negatives. I don’t accept that autism is an entirely negative condition, so I attempted to argue with her on that basis. I didn’t get very far, mainly because the writer kept asserting that her children were human beings, not just autistic human beings, which pretty much ended the discussion. After all, who is going to argue with the inherent humanity of any person? I didn’t see anywhere to go, even though something still felt very wrong to me.

Then, yesterday, I read another article, this time by someone on the spectrum who has two children on the spectrum. She, too, asserted that her children are “more than their autism.” Her view of autism is not entirely negative, and so I had a much easier time reading and thinking about what she had to say. And yet, the assertion still bothered me. To try to get at why, I decided to apply the question to myself: Am I more than my autism?

That’s when I began to understand the problem.

The term autism is itself very problematic. I agree with Amanda Baggs when she says that there is no such thing as autism, and that there are only autistic people. I don’t feel that autism has an existence separate from me in any kind of quantifiable, objective way. In fact, I’m coming to feel that the word autism is simply a social construct. After all, if it’s all about behaviors, with some behaviors considered impairments, how can it not be a social construct? In some cultures, making eye contact, especially for long periods of time, is considered rude. In some cultures, it’s perfectly acceptable to rock back and forth on a regular basis. After all, observant Jews pray three times a day, and rocking back and forth constantly is part of the ritual. We’ve been doing it for centuries. And yes, some people find it very strange, but their experience of us is a cultural judgment, not evidence of an objective reality.

Even if you move toward describing autism in terms of subjective experience rather than externally verifiable behaviors, it’s still difficult to escape the social implications of what happens to our descriptions of our own experience. I can describe my difficulties with noise, my inability to filter sound, my extreme sensitivity to the energy of other people, and yet, if I take those together and make them part of the definition of something called autism, I’m moving them from the realm of autistic experience into the realm of a category—a category in which my experience can be broken down into a list, in which it can be medicalized, in which other people can become “experts.” That’s a realm that the culture constructs constantly and values excessively.

So the very idea of using the word autism as though it is separate from my personal, subjective, daily reality is very fraught. I didn’t feel that way when I named my blog Journeys with Autism, but I feel that way now. (And no, I’m not changing the name of my blog again, because if I changed it every time I had a new realization, I’d drive everyone nuts.)

But there is something more about the question “Am I more than my autism?” that is very troubling. Or perhaps it’s the expected answer that’s troubling—the expected answer being “Yes, I am more than my autism. I am a human being. Autism is just a part of whom I am.” This answer is very problematic, for a number of reasons, not the least of which is that it threatens to divide me up into component parts: part autistic, part Jewish, part female, part this, part that. I don’t feel like a series of component parts. Everything I am is completely me: I am entirely autistic, entirely Jewish, and entirely female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Even more important, though, is that my humanity is implicit in my being a woman, in my being Jewish, in my being autistic. After all, am I more than a woman? Is my husband more than a man? To say yes, we are both human beings, is to miss the point entirely. Being a woman automatically means that I am a human being. Being Jewish automatically means that I am a human being. Being autistic automatically means that I am a human being. Being female, and Jewish, and autistic, are not component parts of being human, nor is being human somehow above and beyond them. Being human saturates them. Being human is what makes being female, and Jewish, and autistic worth the effort.

And make no mistake: being a woman and being Jewish are not easy, any more than being autistic is easy. Being a woman and being Jewish are not entirely positive experiences, any more than being autistic is an entirely positive experience. For some reason, it’s easier to speak of the mixed experience of gender and ethnicity than the mixed experience of being autistic, at least in this day and age. No one but a misogynist would deny that being a woman is a wonderful experience in some times and places, and a horrendous one in others. No one but a dyed-in-the-wool anti-Semite would deny that being Jewish can be extremely joyous and extremely difficult, depending on circumstances, and often at the same time. But there are days in which I’m hard pressed to find anyone saying anything positive about being autistic, as though being autistic were in some other sort of category, as though the usual paradoxes of being human don’t apply.

Many, many people don’t really see being autistic as being fully human, and in that blindness lies the problematic basis of the original question. When people say that their children are more than their autism, I think what they’re reacting against (and rightly so) is the pernicious idea that somehow being autistic and being human are mutually exclusive. And yet, at the same time, they run the risk of playing into this idea by asserting that there is something more than being autistic, and that is to be human. I’m not saying that the risk of separating the categories autism and human always results in the two becoming mutually exclusive, but it sets up a dichotomy that can easily reinforce the prejudices of a great many people.

When you come down to it, perhaps what parents are really saying is that their children are more than the stigma of the word autism. They are more than a medical diagnosis. They are more than the cultural refusal to celebrate them. They are more than the daily reminders that there is a construct called “normal” in which life is supposed to be easy and they don’t fit.

I have no argument with any of that.

But I’m not going to answer the question “Am I more than my autism?” because I do not accept its premises or its implications.

I am an autistic person, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-autistic people do not. I am a woman, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that men do not. I am Jewish, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-Jewish people do not. I am thankful for my life, whether or not it’s painful, whether or not it’s easy, and whether or not it measures up to the dreams I once had for myself or that other people had for me.

A dream is only a starting place. Life is where the action is.

© 2010 by Rachel Cohen-Rottenberg

What This Post Is Not About: This post is not about healing autism or any of the expressions or manifestations of autism. Autism is not a disease or a disorder. If you interested in healing or curing autism, you are so on the wrong blog.

What This Post Is About: This post is about the fact that I have finally figured out that there is absolutely nothing wrong with me, and that I need to begin healing from my relationship with a mental health establishment and pharmaceutical industry that are doing me far more harm than good. I say this not as an anti-medical zealot, and I am certainly not telling anyone else what to do. I am speaking solely for myself, as an autistic individual who realizes that the system is all upside-down and backwards regarding what I need.

As many of you might have gathered, the past month or so has been very difficult for me. One of the triggers has been that I’ve inadvertently overcome (for the moment) my lifelong use of food as a means of sensory and emotional self-regulation. In other words, I’ve gone cold-turkey off my food addiction. Here’s how the current round began:

A few weeks back, I mentioned to the doctor who manages my medications that I had had a killer migraine and that it had been the first time in years I hadn’t been able to knock out the earliest warning signs with Sumatriptan. When he asked how many times a week I was taking Sumatriptan, and I casually answered, “Oh, about three or four,” he said that I was actually getting three or four migraines a week. The fact that I was recognizing the early symptoms and intervening did not mean that I wasn’t getting them; it just meant that I was stopping the worst effects of them. So, he suggested a preventive, Topamax, which is also an anti-seizure medication. I was to start out with one tablet a week, and progress to two, and then to three. He warned me that one side effect would be appetite suppression.

Nearly three weeks later, I’ve lost seven pounds I didn’t need to lose. Until yesterday, I was in so much emotional pain that it was physically almost unbearable. Much of the emotional pain was the result of withdrawing, without warning, from the food addiction and experiencing all the emotions that came screaming out into the open. As of Monday, the worst of the withdrawal and its attendant demons seem to have past. Now, I’m left mainly with the physical impact of the medication, which is not having an exactly inspiring impact on my emotional state: I’m nauseous almost all the time, I have no appetite, I lose my balance several times a day, and I’m suffering from acute exhaustion.

On Monday, I went to see an alternative practitioner. Bob had spoken highly of her, and I thought, “Why not?” Just to get the negative out of the way first: She was a complete and total pain in the ass about autism. She kept saying things like, “You’re not autistic” and “You don’t have to use such a negative word about yourself.” And yes, she kept saying these things despite the fact that I consistently responded with sentences like “Autism is a very positive word for me.” She kept on at random intervals until I just about wanted to explode. (I didn’t. Score one more for the autistic kid!)

But what she got right was astonishing. Right away, she said that I have a lifelong issue with feeling radically unsafe, as though every millisecond of every day, some disaster will happen and I won’t be able to handle it. I had said nothing past a few pleasantries and “Where is your bathroom?” She just saw it. At one point, she tried to do some mind-body work with me and, when I started crying uncontrollably, she asked if I were on any medication. When I listed out my anti-depressant, anti-anxiety, and anti-migraine meds, she said something to the effect of, “The medication is getting in the way of your being able to develop your mind and spirit. It’s numbing you out.” I had been thinking along similar lines of late. She suggested that I wean off my medications extremely slowly and carefully and go to an herbal healer (at the cost of about $600/hour—not happening) to cleanse and balance my system. Instead, when I got home, I bought an herbal cleansing system online that I’ve used before with very good results. It’s a first step. The package should arrive in the next week or so.

At the moment, healing my body is my life’s work and it doesn’t get much more basic than that. I’ve got a five-part plan, and I’m aware that it’s going to take a long while, and that it’s going to be a full-time job. It’s also going to be a very good reason to get up in the morning, because I like getting down to basics very, very much. Here’s the plan:

1. Cleanse my system using herbal formulae and lots of water (three months).

2. Wean myself off my medications and find natural alternatives.

I’m going to start weaning off the Topamax tonight. I added one tablet last week, and now I’m up to three, so going back to two should be fine. I reduced my anti-anxiety med, Lorazepam, by a third as of last night, and I actually slept better than I had in a long time. My aim is to wean off the Topamax and Lorazepam first, and leave the Zoloft for last. I figure a) the Topamax is new and I’ve lived without it for most of my life and b) the Zoloft takes care of anxiety, so I’m covered.

And yes, I’m being careful. Trust me. I value my health and my sanity very highly. Bob and I are going in together to see my prescribing doctor at the end of the month to discuss the whole matter.

3. Start buying nutritious food, cook it myself, and feed myself three times a day.

This one will be demanding, but I am determined.

4. Declare my independence of the so-called mental health profession.

If I don’t get myself away from the therapists and the psychiatrists and the mental health professionals, I swear to God, they’re going to drive me into insanity. Sometimes, I think that if I see my therapist one more time, my exhaustion will become so acute that I will never recover. And if my prescribing doctor tells me again that I just need to have more fun, I think my eyeballs are going to pop out.

I can’t begin to catalogue all the many things that aren’t working, so I will just give you my overall sense. First of all, my therapist, whom I see once a week, is a very nice man. However, I get the feeling that every week, we are practicing psychotherapy on each other. I am sitting there, trying to understand how his mind works, and he is sitting there, trying to understand how my mind works. The difference between us is that he thinks he understands how my mind works when he doesn’t, and I know that I don’t have a clue about how his mind works, except that it works differently from mine. This difference in both cognitive pattern and insight means that he consistently gives me advice that would work for someone who is neuro-typical and/or does not have my difficulties with language, auditory processing, and acute emotional/empathic sensitivities.

So, the last time we spoke, and I mentioned my desire to meet other autistic and otherwise disabled people, he reminded me not to forget about the neuro-typical people in my life with whom I get along and whom I love—namely, my husband and daughter—and that I should consider befriending neuro-typical people as well. Now, it’s not that I don’t have neuro-typical friends. I do. Some are in California, some are in Massachusetts, and one is in Minnesota. (I had another one out west, but he turned out to be on the spectrum. Yay! Next to Bob, I consider him my closest friend.) But all of these neuro-typical friends are ones I made when I could still pass for neuro-typical. In the present tense, which is where I currently live (sorry for the redundancy, but I couldn’t resist), I can’t pass. I can’t meet people in public settings and talk with them. I can’t go dancing. I can’t go to public lectures. I can’t go to synagogue. How exactly am I supposed to meet neuro-typical people, much less hang out with them in their usual haunts? My attempts to get them to hang out with me in ways that work for me have not been wildly successful.

However, all of these basic, logistical, physical, unchangeable realities of my autistic life, which I have explained patiently to my therapist, and in great detail, over the course of many months, seem to fly out of his brain for no apparent reason. Someday, someone will do some research as to why such important pieces of data would mysteriously disappear from the brain of an otherwise intelligent neuro-typical therapist with a PhD, but until he consents to be a research subject (and one of his peers consents to make him one), I just don’t see it happening.

And then there’s my prescribing doctor, who I like to call Dr. Meds. Like my therapist, he is a very nice man. As psychiatrists go, he knows his pharmaceuticals—to a point, that point being how medications react on the bodies of neuro-typical people. And of course, he would know only how they react on the bodies of neuro-typical people because, to my knowledge, pharmaceutical companies don’t seek out autistic people as test subjects. So, he gives me Topamax, which is an anti-seizure medication, which means it affects my neurological system—my very, very, very sensitive neurological system. So, cool, I’m not getting migraines. Or seizures. But then again, I never got seizures, so now, my brain is so overloaded with medication to keep it calm that I’m falling asleep in the middle of the day and falling down on a regular basis. And the appetite suppression? Appetite suppresion I could live with. The Topamax has put my appetite into a coma. It’s on life support. It’s got tubes sticking out all over the place and my former mother-in-law (who doesn’t speak to me anymore, and no, it wasn’t anything I said) has activated the prayer chain in her church on its behalf.

It’s pretty unbelievable when the people who are supposed to be helping you don’t know anything about autism. It’s even more unbelievable when they don’t think they need to know anything about autism. It’s even more unbelievable when they don’t think they need to know anything about autism and they prescribe you medication.

5. Publish my book.

I know that it doesn’t seem like publishing a book is up there with weaning off medication and eating more carrots, but it’s been immensely healing to nurture my book toward publication.

And so, dear friends and readers, if you have any wisdom regarding natural remedies that you have found beneficial, by all means, please share. And if you don’t and just want to comment on this post, by all means, please do!

© 2010 by Rachel Cohen-Rottenberg

Last night, I had a killer migraine. Usually, when I feel a migraine coming on, I take a tablet of Sumatriptan, which stops the migraine in its tracks. It has always worked—until last night. The migraine didn’t respond to medication at all. By 8 pm, I was so nauseous and shaky that I needed Bob to help me navigate to the living room so I could lie down. I couldn’t bear to open my eyes; any kind of light was like torture. I couldn’t even look at the fire in the woodstove. I had the dry heaves, and at one point, I went into shutdown and couldn’t speak or move at all.

But mostly, for about two hours, I stimmed almost constantly—rocking, hand flapping, hitting my head with my fist, over and over. It actually helped—a lot. I’m not sure how much it helped to reduce the pain, but it certainly soothed me in the midst of it. As I went through the whole ordeal, it became clear that a lot of pressure has been building in me. Some of it has to do with Bob’s daughter, and even more of it has to do with my almost continuous anxiety and my drive to figure things out. My poor mind felt so incredibly tired last night, as though I’d overworked it to the point that it was literally screaming at me to stop.

Once my defenses were down, I finally saw what most of the pressure is about: I feel like a freak.

There, I said it. I feel like a freak. I feel like a freak to the point that I don’t want to go outside and be seen with my stupid headset on, or try to talk to anyone, or do anything out there at all. I just want to hide. Watching how naturally the stimming came to me, and how much it helped, brought the issue out into the open. I thought, “Wow, I’m really autistic. Look at what I’m doing—all those things that I’ve been taught are sick and strange and wrong.” Then I realized that I feel sick and strange and wrong, pretty much all of the time, and I’m exhausted by it. It takes so much work to defend against the feeling, to avoid it, to tip-toe around it, to change it. Last night, I hit a wall of exhaustion, and my feelings about myself came pouring out.

I feel like my whole life is strategy. The spring is here, the days are warmer, and I want to go out and enjoy it all. But how do I deal with the neighbors? Do I take off my headset and talk to them? If so, how often? Will they think I’m anti-social if I don’t? Should I have Bob explain the situation to them? All these questions have been circulating through my mind for weeks, and I can’t find any answers. I’m afraid to try anything. I’m completely stuck.

Feeling like a freak puts me in a terrible trap. If people believe that I’m really autistic, I’m afraid that they’ll see my headset and my silence as bizarre, and they’ll just ignore me, which will make me feel even more isolated than I already feel. If they don’t think I’m autistic, or if they think I’m only “mildly” autistic (whatever that means), then they’ll think I’m putting on an act. If they only knew that my whole life up to this point has been an act! I wish there were a third alternative, that went something like: “They will know that the way I am is normal for me, and they will meet me where I am.” But I can’t depend on that response, to put it mildly. At the thrift store, they meet me where I am more often than not, but I’m always afraid that all that will go away.

I’m always afraid, it seems. Sometimes, it lays me low, and sometimes, I just carry it and keep going. Physically and emotionally, I feel things so acutely that it’s hard to feel resilient, and it’s hard to know when something will total me.
 
I still want to be normal, so much. Not because normal is better, but because it’s physically easier. I’d give almost anything for one day in which I could do anything I want without risk of overload. I’d give almost anything for one day in which I could keep a conversation with a neighbor going for as long as I want. I’d give almost anything to be able to go to a restaurant or a movie without needing three days to recuperate.

But that’s not my life, and very little has prepared me for who I really am.

Even as I write this, I know that someone will read it and think, “Wow, so I’m not the only one.” And then I’ll remember that I’m not the only one, either.

© 2010 by Rachel Cohen-Rottenberg

Recently, a friend sent me a link to an article written by a young man named Jacob Artson. Jacob is 17, and describes himself as nonverbal, severely autistic, and developmentally disabled. His article, Encumbered and Blessed, is a very moving, honest, and insightful treatment of his experience of inclusion and exclusion in diverse communities.

Jacob’s father is Rabbi Bradley Shavit Artson, and the article appears on the website for the United Synagogue of Conservative Judaism (USCJ). I have no affiliation with the USCJ, and it is not my intention to proselytize for Judaism by referring you to this article. (I do not allow proselytizing on this blog or in my life.)

I am posting the link only because the article is an absolute gem. I’d be very interested in hearing your responses to it.

© 2010 by Rachel Cohen-Rottenberg

When I first started therapy (in 1983), I learned that I had to work on improving my self-image. I learned that I had low self-worth, and that if I worked very, very hard, my sense of self-worth would improve.

And it did. I think. At least, I was under the impression that it improved, because I was feeling ever more confident about my abilities as a working woman, a wife, and a mother.

But now I’m experiencing a new phenomenon. I no longer have low self-worth. What I have is no self-worth. At all.

That’s right. None.

I am not exaggerating. Last night, I looked at myself and realized that there is a big empty space where my self-worth ought to be. How my self-worth snuck off without my noticing is beyond my comprehension. But it’s gone. I’ve looked, and it just ain’t there.

Perhaps it went like this: Seven years ago, when I married Bob, I quit my full-time job to become a full-time homeschooling mom; then, a few years later, my daughter went to regular school, and the homeschooling ended. So, in the past seven years, two of the most important ways that I built my self-esteem have gone away: working at a job and homeschooling Ashlynne. During much of that time, I lived in a community that was not very welcoming to me (to put it mildly), and that experience further contributed to my self-esteem issues.

But, you see, I still had “self-esteem issues.” There was some self-esteem with which to work. Now, it’s just up and left.

It’s possible that with working and homeschooling gone, my autism diagnosis set off a massive identity crisis, followed by the realization that my entire way of living had to change, followed by a toxic explosion of internalized disabilism. Whatever the reason, I feel no self-worth at all. I do a beautiful job repairing a quilt, and all I can see are the imperfections in my work. I knit my husband a sweater from the Icelandic wool he spun himself, and all I can see are all the mistakes I made. Everyone in creation is telling my husband what a wonderful sweater he’s wearing, and it has no impact on me at all. People tell me how much they like my writing, and it doesn’t penetrate the dense fog I’m living in.

It’s gotten me questioning how one builds self-worth in the first place. I mean, did I ever have self-worth, or did I just do a lot of things that convinced me I did? Having a job and being a homeschooling mother are both wonderful, but they were always going to end; therefore, I based my self-esteem on impermanent things. That seems like a dangerous move from where I sit right now.

I used to have a decent sense of myself because I always felt that I could fake it well enough to get by. I could make pleasant conversation; I could go to soccer games and act like I belonged; I could chat it up with the neighbors about anything and everything. But working hard to fake it no longer applies. I walk around with a headset and don’t speak or hear very much at all in the outside world. Pretending to be normal basically went up in smoke once I realized that I had to wear a device in public that most people use when mowing the lawn.

Worse yet, my conversations with my therapist seem to be having a negative impact on me. For instance, last week, I told him that I feel like I need to stop talking entirely when I’m out in the world. He kept saying that perhaps it wasn’t all that black and white, that I could be more moderate, check in with myself, and talk more when I wanted, and less when I didn’t. What he doesn’t understand is that for me, moderation and autism do not mix. Moderation can only apply when one has a fairly moderate experience of the world. When one’s experience of the world is extreme and intense, a moderate solution can be worse than none at all.

I’m not sure that my therapist realizes that the minute I open my mouth, I’m already in way over my head. I crave communication. I want to keep talking. So much. But I’m playing catchup with everyone. I’m always a few clicks behind the conversation, and I have to make a tremendous effort to follow what people are saying. When it comes time to speak, I have to call on resources I don’t often have. Plus, I am so used to working hard at speaking that I forget that I’m actually working hard at speaking. It’s always a strain, but the strain is so familiar that I don’t even notice something is wrong until it’s way too late and everything in my body hurts.

I know that my therapist is responding to my upset about my social isolation and trying to come up with solutions, but I don’t need solutions. Unless I happen to run into a dozen autistic people in my local community, my social isolation will remain. So perhaps a better strategy would be to talk about how to handle the seriousness of my disabilities and their consequences for my life. I will never be able to walk through the world as a hearing person. I will never be able to have a relaxed conversation out in public. I will never be able to pass for normal again. I would like some help dealing emotionally with the gravity of the situation, not all kinds of ideas about moderation that simply cannot work for me.

Some years ago, I ran across a book called Shambhala: The Sacred Path of the Warrior by Chogyam Trungpa. The author writes about the spiritual warrior in a way that describes the impulses and demands of my autistic experience. I was drawn to the following words even before I knew about my autism:

“[The spiritual warrior] has no room and no desire to manipulate situations. He is able to be, quite fearlessly, what he is.

[P]aradoxically, the warrior finds himself more alone. He is like an island sitting alone in the middle of a lake. Occasional ferry boats and commuters go back and forth between the shore and the island, but all that activity only expresses the further loneliness, or aloneness, of the island. Although the warrior’s life is dedicated to helping others, he realizes that he will never be able to completely share his experience with others. The fullness of his experience is his own, and he must live with his own truth. Yet he is more and more in love with the world. That combination of love affair and loneliness is what enables the warrior to constantly reach out to help others. By renouncing his private world, the warrior discovers a greater universe and a fuller and fuller broken heart. This is not something to feel bad about: it is a cause for rejoicing. It is entering the warrior’s world.”

I’m not sure I’m ready to rejoice.

© 2010 by Rachel Cohen-Rottenberg

I’m tired of the Asperger’s label.

I’m tired of people using it to distance themselves from other autistic people.

I’m tired of the folks who imply that having Asperger’s makes being autistic okay, but that being autistic is somehow not okay.

I’m tired of being put into some sort of nonsensical order in which Aspies rate higher than other autistics.

I’m tired of division.

I’m tired of hierarchy.

Bev’s latest post says it all for me. And by changing the name of her blog, she’s inspired me to do the same.

At some point, I hope to change my domain name as well. I haven’t figured out the mechanics of using a new domain name and making sure you all can find me there, but when I do, I’ll make the change.

UPDATE: If you’ve found the new URL, you’ll see that I’ve changed my domain name. I’ve specified the proper settings to redirect people automatically from aspergerjourneys.com, but it may take up to 72 hours for the settings to take effect. Argh. Meanwhile, I’ll need to go through and repost all my photos again, since they’re attached to my old domain name.

Note that I also have a new email address: rachel@journeyswithautism.com.

© 2010 by Rachel Cohen-Rottenberg

Jenn Power is a typically abled woman who lives with disabled people in an intentional community called L’Arche Cape Breton. She and her husband are the parents of twin boys with Down Syndrome. A week or so ago, I was reading her blog, Possibilities, when I came upon a post about some harsh words directed at her on the New York Times blog Motherlode. Apparently, this community leader and loving mother had committed the unpardonable sin of saying out loud that she would not want to cure her sons of Down Syndrome. I was especially struck by these words:

“I know that my position is a minority one. When you throw your lot in with marginalized people, you get marginalized. I understand that.”

Reading these words set off a wave of new realizations about my autism, my relationship with Bob, our ongoing struggles, and new possibilities for our lives.

Many of us autistic folk have talked and written about living on the margins, observing group dynamics, and deciding how to act. That feeling of living on the margins has always felt so precarious to me. I’ve always felt as though I were balancing on a fence post, living in perpetual fear of falling over backward.

So today, instead of thinking about “living on the margins,” I started thinking about “living in the margins.” The more I thought about it, the more I experienced a greater sense of spaciousness. All things being equal, I’d prefer to be able to come and go from the margins to the center and back again, but all things are not equal. In this society, I have a disability called autism, and I live in the margins of the culture all the time.

Because I’m also white, American, middle-class, and well-educated, the margins I live in are quite a bit wider and more elastic than the margins in which others live. In other words, I don’t for a minute believe that being autistic erases all other privilege, nor do I believe that my privilege can ever erase my marginalization. If anything, being autistic and otherwise privileged creates an odd kind of self-perpetuating expectation. I often think that, given my privilege, I should be “higher functioning.” I should be much more “normal.” I should feel a greater sense of “belonging.” I should be able to figure out how to live somewhere other than in the margins.

But of course, I can’t. That’s what being disabled is all about in the world as presently constituted.

Ever since Bob and I made our relationship known eight years ago, I have felt progressively marginalized. The first attempt to marginalize me took a very tangible form: one person on the synagogue board of directors suggested that Bob should leave me, and that I should leave the community entirely. The response of the other board members? Silence. While Bob did not leave me, we did leave the synagogue community, because when people saw us together, they spoke with Bob and ignored me completely. The same kinds of things happened in the larger community.

Virtually all of us on the spectrum have had that feeling of being hidden in plain sight, but until recently, I had never thought of it as an experience of marginalization. Instead, for years, after every outing, Bob and I would have long, tedious, upsetting discussions about how he got all the attention, about the ways in which people were ignoring me, about the fact that he didn’t step in and make it stop, and about how powerless and angry I felt. Because we couldn’t define what was going on in terms that made any sense, these discussions were exhausting and unproductive. We just kept having the same argument, over and over.

After I read Jenn’s piece, Bob and I had a long talk about marginalization, and suddenly, I realized why I had been so angry. I realized that Bob had never consciously given up his privilege of being “normal” and joined me in being marginalized. Not that I wish being marginalized on him or on anyone else, mind you, but do we really have another choice? After all, as Jenn said, “When you throw your lot in with marginalized people, you get marginalized.” Isn’t that what happens to parents of autistic children? To the family members of autistic adults? How many neuro-typical people want to befriend them, or listen to them talk about their loved ones? Not many.

Although Bob is quite wonderful, I’m tired of seeing him as the de facto prototype of “normal.” Some time ago, he said that it is hard to go out with me because I have to block sound, and he doesn’t like having to talk loudly in order for me to hear him. I’ve always felt uncomfortable with the impasse in which that leaves us, but I hadn’t been able to figure out how to get past it. Finally, in the midst of our discussion about marginalization, I blurted out words to the effect that if I’m going to feel human, he really needs to come into my world and stand next to me. Maybe, when we go out walking or to a restaurant, we don’t talk at all. Or maybe he talks loudly and feels a bit conspicuous. I don’t know. But uncovering my ears out in public really can’t be part of the plan, and I can’t stay home all the time, either.

For both our sakes, I don’t want Bob by my side 24/7, but our lives are becoming increasingly separate, and it bothers me. In the course of our conversation, he said that he’s willing to drop a lot of activities in the outside world, start from scratch here at home, put our relationship first, navigate the world together, and see what possibilities flow from there.

To get ourselves started, we did something simple: we went grocery shopping together. Part of our agreement was that “together” was the operative word. If I’m alone at the grocery store, it’s challenging, but I stay completely focused on getting my shopping done, and it works. However, when I’m with Bob, I’m more open, and if someone else comes in and starts talking to Bob, I feel very disoriented in an already challenging situation. So, if someone were to come over to talk, we agreed that Bob could say whatever he needed to say in order to keep his focus on me. In fact, I gave him permission to say just about anything about me he pleased: that I’m disabled, autistic, dazed, confused, weird, and undeniably odd. I don’t care. It just doesn’t matter to me anymore.

Fortunately, no one came up to Bob and wanted to talk, so we got our shopping done easily and had a very good time of it. Even lugging the groceries home was fun!

As we’ve gone through this process, Bob has realized that his ongoing resistance to standing in the margins with me derives from the fact that the only time he’s ever focused on being with a disabled partner, she was dying. Part of him hasn’t wanted to accept that I’m disabled because, when the thought arises, his mind goes to a very sad, scared place. But I’m not dying. On the contrary: I’m fighting like mad to feel part of the world, to feel that my life is meaningful, to feel less afraid and more powerful. I’m fighting to widen the margins in which I live, for myself and for other people.

I’ll let you know how it goes.

© 2010 by Rachel Cohen-Rottenberg