Archive for September 30, 2010

Word of Honor

September 30, 2010 Rachel Communication, Social Gatherings

Over at Life in the House that Asperger Built, there’s been a great discussion about what happens in the minds and hearts of those of us on the spectrum when people don’t mean what they say. One of the examples in the comments section is the ubiquitous line “We should hang out sometime.”

I’ll admit, I used to believe those words. After all, why would someone say they wanted to hang out and not actually mean it?

Wait….Wait….Don’t tell me….I know this one…..Just give me a moment to think and….

Oh, right! It’s a social formality. A mere pleasantry. A little bit of chit-chat to wile away the precious hours of one’s life. A curious way that neurotypical people say, “I hereby acknowledge that you have not completely alienated me or freaked me out.” That’s all. And yet, I used to think that people actually meant that we should hang out! Then, one day, I looked at my research and realized that the data did not bear out this conclusion.

I won’t lie. (For those of you not in the know, that’s a sign that I have a disorder. More on that later.) When I realized that I couldn’t take people at their word, it pissed me off, but I knew that the only thing to do was to accept the data and proceed appropriately. I didn’t much like the idea of giving in and not believing what people actually said, and yet, I understood that follow-through means everything, and that my life would be much happier if, when people said, “We should hang out sometime,” I just heard “Blah blah blah blah blah.” After all, they might just as well have said, “Blah blah blah blah blah” for all the good it was doing my poor heart and mind, right? Right. So now, I just hear “Blah blah blah blah blah,” and my life is, in fact, much happier. I don’t complain in tones of high self-righteousness to my husband. I don’t get angry. I don’t get disappointed. In fact, I feel myself just a tad closer to being a full-fledged member of American society.

Now, there are some very good things about American society, don’t get me wrong, especially if you are privileged enough to partake of them. And then, there are some really, really fucked up dysfunctional things about American society, too, as most people in America will tell anyone who will listen. The problem is that so few people agree with me on the dysfunctionality of saying words you don’t mean that my unhappiness with the phenomenon has become evidence of a neurological disorder.

I’m reminded of an incident that happened a few years back around my daughter’s birthday. She had invited four friends to go to the movies, then out to dinner, and then back to our house for a sleepover party. All four kids had said they were coming, and we got the house set up for our visitors. When the day of her party came, two of the kids didn’t show up at all, and no one called to let us know they weren’t coming. My daughter had been in school for about a year at this point, and she was completely nonplussed about the whole thing, saying, “Yeah, mom, it happens all the time.” I was very upset, though, and Bob thought it was pretty rude.

So, later that night, I emailed the mother of one of the kids and asked what had happened. Well, it turns out that the family was very busy, you understand, with relatives coming in from out of town, and their daughter had to babysit, and well, they were so terribly, terribly busy that they just plain forgot about my daughter’s birthday party, but they’d be ever so happy to reimburse any expenses I’d incurred on behalf of their child. I told them that I didn’t want their money, and that I was hoping for them to take some actual, um, responsibility. The response? “Apparently, we’ve really disappointed you.” No shit, Sherlock.

A few days later, I spoke about the incident with my counselor, a neurotypical woman who completely agreed with every word I said. She had come to America from Portugal as a child, and she knew right away that something was very much awry with the society she had entered. She said that in the culture she came from, your word was your bond, and people had a sense of honor. If you said you were going to do something, you did it. Your reputation, your honor, and your sense of ethics all demanded it.

So there. I have it straight from the mouth of a neurotypical woman that this whole thing is a question of social and ethical norms (or the lack thereof), not a question of neurology, literal thinking, failure to read nonverbals, or any other goddamned thing that other people want to lay on us to excuse their own behavior.

And so, dear readers, if we ever meet up, and I say, “We should hang out sometime,” rest assured that I mean it. It may not happen right away. It may not mean that we’ll actually want to hang out a second or a third or a fourth time. It means that we should hang out sometime. I say what I mean and I mean what I say. If you are willing to meet me halfway, we will hang out. Word of honor.

© 2010 by Rachel Cohen-Rottenberg

22 comments

Reflections on Being Jewish and Autistic: Different Minorities, Same Critique

September 27, 2010 Rachel Ableism, Critiques of Autism Theories, Empathy, Judaism and Jewish Life, Marginalization, Modes of Thought, Myths about Autism, Privilege

For almost two years now, I’ve become increasingly aware of how other people regard autistics. As you all know, the news is not altogether good. As I’ve waded my way through all manner of error and nonsense, I’ve had the most familiar feeling, as though I had heard it all before. The other day, it finally occurred to me: I’ve encountered the same basic stereotypes and misinformation about Jewish people as I have about autistic people.

All minority people, to some extent, have to endure similar false charges, but the similarities between my experience of prejudice as a Jew and my experience of prejudice as an autist are striking. Here are some of the most damaging myths:

We don’t love properly. In the larger, mainly Christian culture in which I’ve lived my life, the view seems to be that the Jews of the “Old Testament” were all about strict justice, and that the Christians of the “New Testament” were all about love. (I put the names of the books in quotation marks because I don’t see one as being old and outmoded and the other as having superseded it; I see them both as valid traditions in their own right.)

The Jewish God, the critique goes, is only a God of judgment, a God of punishment, a God who lacks forgiveness, and we are just like our God: cold, judgmental, merciless. The Christian God, on the other hand, is a God of love and forgiveness. When I was growing up, without much of a Jewish education, I actually believed all of this. I believed it until I was in my late thirties, and I asked a rabbi whether there was anything in Judaism to help me heal my broken heart. His reply? “Yes. Our people brought the truth to the world that there is a God who loves us and cares about our lives.” I nearly fainted. When I began to study and practice Judaism in adulthood, I was startled to find that we are instructed to love our neighbors, to love our enemies, to love mercy, and to make right the wrongs of the world.

And what did I believe about autistic people until I found out that I actually am one? I believed that autistic people don’t have empathy, the very basis of loving relationships. The lack-of- empathy trope has been at the core of autism theory for a number of years, and it’s appalling how many people still believe it. Of course, they don’t appear to have met any of the autistic people I know, nor do they seem to have much empathy for the pain and suffering this canard causes autistic people on a daily basis.

We think terms of black and white. Now, the interesting thing about this particular myth is that it betrays some pretty black-and-white thinking on the part of the people who accuse us of black-and-white thinking. For example, when people say that Jews are only about justice, it’s justice of a kind that brooks no shades of gray. Christians, on the other hand, are said to be all about love, which encompasses many, many shades of gray. But the truth is that Jewish tradition has always been concerned with a concept called tzedakah, which is essentially an action that combines justice (righting a wrong) with love (easing and, ultimately, healing the suffering of other beings). We do not think in black and white about justice and love; in fact, we combine them. To split them apart is an example of black-and-white thinking at its best.

Now, consider the myth that autistics think in black and white, usually expressed as our being all about logic and systems. In fact, some researchers believe that we have Extremely Male Brains that are high on systemizing, while non-autistics have brains that are high on empathizing. And yet, when I look at my own life, and that of other autistic people, I often see a capacity for high levels of both systemizing and empathizing, and I see them working together. We don’t split them apart. Other people do, and then they tell us that we’re the ones with the black-and-white thinking. It’s enough to make you weep.

We are excessively logical. Many people believe that Judaism is all about “legalisms,” and that it does not concentrate on coming from the heart. This particular myth is very old and very intractable, in part because most people believe that Judaism begins and ends with the “Old Testament,” ignoring thousands of years of mysticism, story-telling, discussion, ritual, and practice that are all about opening one’s heart. I’m not saying that all Jews come from the heart, any more than all Christians come from the heart. I’m saying that Jewish culture has its own ways of combining head-thinking with heart-wisdom that are little known or understood by others.

Of course, autistics are constantly stereotyped as being overly logical—except when we’re stereotyped as being out of control. And yet, somehow, we manage to have friends, families, relationships, children, and ethical lives.

We insist upon being different. For a number of years, I wore garb that clearly identified me as Jewish. For awhile, I wore a yarmulke and tzitzis (ritual fringes) every day, all day. During another period, I only wore headscarves and dresses. I now dress in a thoroughly secular fashion. When I didn’t, I got all kinds of attitude about “setting myself apart.” Of course, I wasn’t setting myself apart. I was just being myself. And I wear what I wear now because I am just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Not surprisingly, I have gotten similar messages regarding my autistic sensitivities to all things sensory. I’m told that I’m “choosing” to be so sensitive, that I’m setting myself apart, when I’m really just being myself. And when my sensitivities are not as troubling, I’m also just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Other people are normal, and we are abnormal. Many years ago, when my daughter was small, her father used to pick up one of her friends after school and bring him home. One December, on the way home, the young man said, “We celebrate Christmas at my house. We don’t celebrate Chanuka. We’re not like you. We’re normal.” My ex-husband took the long way home and patiently explained the concept of diversity to the young man until he got the picture.

And of course, we autists get stuck with the “abnormal” label all the time—more evidence of that dualistic, black-and-white thinking that “normal” people aren’t supposed to engage in.

We are all alike. In response to all the many myths surrounding Judaism and Jewish people, I did interfaith work for a number of years, teaching workshops in areas schools and churches. Some of the most common questions I got began with the words, “So what do Jews believe?”—as though we all believe the same thing! That was the moment I’d introduce the mantra of “You get two Jews in a room, you get three opinions.”

Likewise, it seems, people have an excessive need to see autistic people as being all alike. It usually expresses itself in terms of narrowing the definition of what autistic means. (I recently saw a YouTube video in which the mother of an autistic young man actually said that you can’t be autistic if you can speak. I was flabbergasted. ) At other times, this need to see us as alike expresses itself in conclusions by researchers that autistic people are a collection of deficits and impairments without any strengths at all. If we have strengths, they are usually called “splinter skills” (a term I despise, even though it’s got some cool alliteration and assonance going on).

Of course, we’re as varied as any other group. I’m not sure what kind of impairment, oops, I mean, neurological difference keeps people from seeing that variation. It might be interesting to do some genetic research on the matter.

We are not fully human. I first became aware that some people believe that Jews are not fully human when I was in Hebrew school and saw a piece of Nazi propaganda in which Jews were likened to vermin. I felt such pride in who I was that I just couldn’t believe my eyes. Who could really think that Jews weren’t people? Apparently, at certain times in history, a great many people.

I was reminded of this experience when I happened upon some writing by Dr. Ivar Lovaas, the psychologist who pioneered the treatment now known as Applied Behavioral Analysis. In discussing the basis of his treatment, he wrote of autistics in 1974:

“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

I shudder to think of how many people still believe this kind of thing.

Of course, Jews, autistics, and members of any other minority group share similar experiences: we are vulnerable no matter how well we “pass” and live up to the standards of the larger culture, and we constantly have to fight against the appropriation of our own voices. Moreover, the solution to whatever problem we appear to pose consists of attempts to do at least one of the following: a) efface our differences to make us indistinguishable from others, b) demand at least a pro forma conversion to the dominant paradigm, which means that we can stim/rock back and forth in prayer/be ourselves, but only out of the public eye, or c) isolate us in ways both visible and invisible.

There are many, many autistic people who cannot do a “pro forma conversion,” who cannot “pass” as I do, and who have endured severe levels of bullying, assault, and isolation as a result. I shy away from the word Aspie and I use the word autistic to describe myself in order to make common cause with people across the spectrum (in the same way that I refer to myself as a Jew, not a denominational Jew, in order to make common cause with other Jews, no matter how differently they may think and practice, and how vehemently I may disagree with them). I will continue to do both. I have Asperger’s Syndrome, and that makes me autistic. I had Jewish parents, and that makes me a Jew. I may present differently from others in my group, but then again, so do trees and birds and rocks. Why should people be any less diverse than the whole of creation?

© 2010 by Rachel Cohen-Rottenberg

16 comments

I’d Like to Thank My Husband, My Daughter, My Cat, My Neighbor’s Cat…

September 26, 2010 Rachel Awards


…and all of you for supporting me in my quest to obtain this wonderful blog award (bestowed upon me by Big Daddy Autism). I couldn’t have done it without you. In accepting this award, I agreed to disclose seven things about myself and pass the award onto seven bloggers I whose work I enjoy. So here are seven things about myself you might not already know:

1) I am left-handed (and left-leaning on most things, like the kitchen counter).

2) I am a hat person. I look good in hats, I’m told. I also love knitting hats of all kinds. Just ask all the people wearing my hats.

3) I have raised and slaughtered chickens (and plucked and cleaned them out, too). Yes, it was difficult at first, but since we did kosher slaughter, it was also a very spiritual experience. (For us. I’m not sure how the chickens felt about it.)

4) I wear shoes in a child’s size 3 because no one seems to make shoes in a women’s size 5 anymore.

5) I have a new cat named Dakota. She meows more than most dogs bark and for no apparent reason.

6) I will watch any movie with George Clooney in it because they’re all so profound.

7) I have watched more Law and Order episodes than is legal in some states.

And here are seven blogs I love reading and that you should definitely check out!

Aspie from Maine
Aspitude!
Incorrect Pleasures
Kataiska Sandwich
Life with Aspergers
SpunkyKitty: My Wonderful World
Static Vox

© 2010 by Rachel Cohen-Rottenberg

18 comments

So I DO Have a Sense of Direction After All!

September 23, 2010 Rachel Hearing, Sense of Direction, Visual/Spatial Skills

All my life, I’ve considered myself to have a poor sense of direction. Actually, poor doesn’t really describe it. It’s more a feeling of having been born without any sense of direction at all. I’ve always said that if I think I should go left, I should go right—except for those few times that I should go left. I’ve gotten lost in all the great cities of Europe. (Okay, most of them. The other ones I haven’t been to.) I’ve gotten lost on rural Massachusetts backroads. I’ve gotten lost on highways. I’ve gotten lost in suburbs. You get the idea.

But that was then, and this is now. Maybe it’s menopause, or maybe I’m just more self-aware, or maybe it’s that I’ve redefined “lost” to mean “having an adventure,” but I seem to be developing a sense of direction here in mid-life, and I’m astonished.

I first noticed this new phenomenon when I was taking a walk through the woods a few weeks ago. It had taken me a long time to venture into the woods, even though the trails are well marked. Some months ago, I began by walking straight into the woods for a quarter mile or so, and then walking straight out. Over time, I learned to take the same winding trail over and over, even when parts of it weren’t marked at all. Then, a couple of weeks ago, I decided that I just wanted to ramble into unknown territory. A number of trails criss-cross one another, and I figured, “Well, even if I get lost, it’s not as though I’m going to end up in New Hampshire. I won’t won’t even make it out of Brattleboro.” So I rambled. At one point, I took a byway I’d never taken, and then I did something I’d never done before: I stopped and oriented myself. I could tell just where I was: which side of town I was facing, which familiar path was parallel to mine, and which way I had to go to make a circle and get back. And sure enough, when I was done, I came out just where I’d thought I would! I was amazed.

As I meditated on this new achievement, I realized that a large part of my success was due to the fact that I was alone. When I’m walking with Bob or with a friend, I’m usually talking and listening, which necessitates all of my attention. I have to focus so much to decode what the other person is saying, and to articulate what I want to say, that I cannot pay attention to where I am. For this reason, I usually get in the habit of going on a path I know well; if I’m familiar with the path, I don’t have to pay much attention to it and can converse all I like. If I’m unfamiliar with the path and can’t pay attention to it because I’m conversing, I have to depend on the other person. I don’t much like depending on other people to tell me where I am, so I don’t tend to explore new routes with others. And until that day in the woods, I’d never explored them myself. So it was really fun and very empowering to realize that I could do it.

Last week, my new-found confidence was put to the test: I drove to my daughter’s soccer game in Putney, a 15-minute drive up the highway from Brattleboro. I hadn’t been on the highway in a year or so, and I had never been to the school where the soccer match was taking place. However, directions in hand, I made my way. At one point, I went the wrong way, but that was because the directions were unclear; the instructions said to follow a left-hand fork when, in fact, I should have taken a left-hand turn. As soon as I realized my mistake, I headed back to a gas station, asked directions, and found my way just fine. As it turned out, my daughter’s bus had gone the wrong way, too, and for exactly the same reason!

Then, today, I had a bit of an adventure. I drove to Miracles in Motion in Keene, NH—about a half hour each way. I found my way to my lesson without any trouble, but on the way back, I took a wrong turn. It was at one of those highway forks with five different road signs, and I hadn’t stopped to think whether I wanted NH-10/NH-12 North or South. Unfortunately, I took the path of least resistance and ended up going North. I realized my mistake immediately, took a deep breath, and said, “Okay. Just take the next exit and find your way back.” It wasn’t quite that simple, but I made it to the middle of Keene and decided to look for signs for NH-10/NH-12 South. After a couple of miles, I could see that I wasn’t getting anywhere, so I turned and headed in another direction. The whole time, I was thinking about how nice it would have been to have a map of the area, and maybe my iPod to access MapQuest, but I didn’t have either one, so I decided to look for a gas station. As I was looking, it occurred to me that if I continued heading out of town, I’d find a state highway. And so I did. I headed out of town and found NH-12 South! I kept following the signs until I was back on the right road.

So, was I lost? I’d prefer to think not. I took a wrong turn and went out of my way for awhile, but with a little bit of thinking, I found my way back, without any tears, fears, or self-deprecating thoughts. In fact, at one point, I thought, “Well, it’s taking a little longer to get home than I would like, but here’s a good opportunity to practice my driving!” By the time I got home, it was as though I’d never taken a year-long break from the road. That’s how confident I felt.

Perhaps everything went so well today because I was alone. In the past, when I was driving my daughter hither and yon, so much was going on. We’d be talking, or music would be playing, or I’d simply be focused on what was going on with her, and sometimes, if we were in unfamiliar territory, I’d get lost. As a result, my daughter has seen some beautiful countryside from the car.

You do see some great things when you get lost, but I like this new sense of spatial orientation quite a bit. I think I’ll continue developing it.

© 2010 by Rachel Cohen-Rottenberg

10 comments

The Tragedy of Ignorance Disorder (ID)

September 16, 2010 Rachel Ableism, Critiques of Autism Theories, Disabilities

Here’s what I’d like to see in the medical literature:

“Ignorance Disorder (ID) is a serious disorder that has reached epidemic proportions in our day and age. We don’t know what triggers ID, but it’s the cause of much heartache for all of us who like to combine empathy with rational thought.

Fortunately, several of my colleagues and I have pioneered a new therapy for this disorder called Defeat Ignorance Now! (DIN!) Once an ignorant person undergoes our treatment, that person will be clinically indistinguishable from his or her enlightened peers. The treatment is really quite simple: we gather a number of disabled people from all walks of life, along with their parents (but only if the parents do not themselves suffer from the disorder), and we have them shout at the afflicted person things like “Listen to us! We are human beings!” and “Why be normal?” until the afflicted person can’t stand it anymore.

After just a few hour-long sessions, people with ID no longer display such inappropriate behaviors as staring at disabled people eating lunch and telling parents of autistic children that they need to hit their kids until they stop melting down. It is hoped that once this treatment becomes widely available, professionals, academics, and even TV personalities will make public and apologetic retractions of such ignorant statements as “Autistic people lack the capacity to empathize” and “If you don’t want to be pitied for being a cripple in a wheelchair, don’t come out of the house.”

We don’t know what causes people to develop the severe impairments of ID. Some posit its origins in a lack of genetic variation in the family tree, resulting in a narrow view of what constitutes a whole human being. We respect the right of people with ID to exist. We are simply working to ensure that they do not continue to make life a living hell for the rest of us.”

© 2010 by Rachel Cohen-Rottenberg

12 comments

How I Feel About Those Who Want a Cure

September 15, 2010 Rachel Ableism, Aging, Critiques of Autism Theories, Empathy, Marginalization, Parenting

Please be warned: If you’re hoping for an anti-curebie tirade, you won’t find it in this post. Likewise, if you’re hoping I’ll say that autism is a disease that must be eradicated, you also won’t find it in this post. In other words, I feel pretty certain I’m going to disappoint anyone who wants me to pick a side and stay there, but the world is not a black-and-white place, and I’m not going to pretend it is—even if you think that being autistic means that I automatically see everything in black-and-white terms. (And, by the way, if you carry that belief about autistic people, I suggest you take a look at your own black-and-white thinking.)

So, here’s the thing: I’ve been reading fairly widely lately in the world of autistic people and their parents, and to put it mildly, my sensitive soul is in an uproar. I’ve been reading posts by parents who compare autism to cancer. I’ve been reading posts by parents who think that vaccines cause autism. I’ve been reading posts by parents who think that we’re in the midst of an “epidemic” of autism. I’ve been reading posts by parents who want to find a “cure.” As an autistic person, I recoil from these kinds of sentiments, and I feel to the core how damaging and how degrading they are. For me, dealing with the psychological and emotional impact of them is far worse than any challenge that arises from being autistic, by several orders of magnitude.

But I can’t just dismiss these parents as narrow-minded people. Even if some of them fit that description, I can’t dismiss them. They are human beings, after all, and something is driving them—something more than the privilege of defining “normal” and a sense of entitlement to children who fit that definition. As a parent, I think I understand it. It’s fear—not fear of autism per se, but fear of what is going to happen to their children as they grow into adulthood and one day lose their parents. Any parent of a typically abled child knows what I’m talking about: the way you worry, from day one, about how other people will treat your child, about whether the child will be hurt by words or deeds, about what will happen when you watch your child go around the corner alone for the first time, or cross the street alone, or ride a bicycle to the corner store, or go on a date. My daughter is getting ready to leave home and spread her wings, and the only thing that keeps me from going into a raw panic about watching my only child move into a world of unscrupulous, nasty, violent people is that I can say to myself, “I stumbled into life with far less support and far less savvy than she has, and I survived.”

For a parent of a disabled child, the fear of what will happen to the child in adulthood must be immense. Who will be there to help your son or daughter when you are gone? Who will assist with daily living tasks? Who will listen? Who will be kind? Who will be welcoming? Who will love your son or daughter as you do? I am a disabled grownup with the sheer good luck of being financially secure, and still, it’s no picnic out here. It’s damned lonely. It’s damned difficult. It’s a very vulnerable existence to live in a world that doesn’t understand me and that, with some very notable exceptions, doesn’t care to.

Personally, my solution to this unhappy situation is to advocate, advocate, advocate: for services, for accessibility, for accommodations, for respect, for open-mindedness, and for an inclusive society for everyone. My solution is not to find a “cure” that will make all of us alike. The solution to anti-Semitism isn’t to do away with Judaism, the solution to homophobia isn’t to do away with homosexuality, and the solution to a world that not-so-secretly hates autistic people is not to do away with our neurotype. The solution to cruelty based on difference is not to erase difference. It’s to build a just and loving world that treasures difference and treats people with dignity.

But look at the world. Does it look like it’s going to become a just and loving place any time soon? Here in the US, we’ve got an economy that’s a wreck. We’ve got towns that are cutting basic services, like having police officers and firefighters on duty. We’ve got people who have to go to court to get legally mandated services for their disabled kids, bankrupting themselves in the process. We’ve got a society that treats most people badly—a society where you’d better hope like hell you don’t get sick, because if you do, either you won’t have health insurance, or you will be struggling with your insurance company for payment while you’re throwing up from chemotherapy. And amidst all this, you’ve got people living with the panic, every day, of sending their autistic children into this kind of world. I can understand the panic and the vulnerability. I can understand that, when faced with the idea of changing the world versus finding a “cure,” some people believe that finding a “cure” seems the more hopeful option—especially if the “cure” is to get people simply to stop vaccinating their kids. People are more hopeful about the miracles of modern science than they are about the capacity of human beings to treat each other with a shred of dignity.

So, yes, I have empathy for where these parents are coming from. I just wish that these same parents had anything approaching the same level of empathy for me. Instead, when I try to discuss anything, one of two (logically contradictory) things happens:

1. I am ignored because I am not autistic enough. The very fact that I can write, express empathy, give birth, and have a good marriage means that I just don’t know what I’m talking about when it comes to autism—that I’m not like their children, that I have no right to speak about their children’s rights, and that I’m too “high functioning” to get it. These people didn’t see me growing up. They didn’t feel what it felt like. They didn’t see me stumbling from one failed friendship to another. They didn’t see me getting bullied and victimized. They didn’t see all the tears, all the pain, all the hard work, all the loneliness. Of course, if I’d remained a victim, I’d probably get more credibility. Somehow, the fact that I’ve managed to find happiness actually works against me. I’ve made a life for myself without IEPs, without early intervention, without occupational therapy, without social skills classes, and somehow, that means that I’m not really autistic. Instead of having empathy for how hard all that was to do on my own, without any support, people take it as proof that I’m not like their children after all. It’s as though autistic people got created by the DSM and early intervention programs, as though we haven’t been here all along, for generations, for centuries, struggling like crazy to stay safe in a world we don’t really understand and that doesn’t really understand us.

2. I am ignored because I am autistic. I find this dynamic happening on some of the “mom blogs” written by neurotypical mothers of autistic children. It’s just like real life. I show up as a mother, and for a little while, it works. I show up as an autistic, and it’s like I’m not even there. I’ve had it happen over and over: I’ll make a comment on a post, and the blogger will respond to every other comment but mine, no matter how short and sweet and lacking in substance the other comments are. And no, it’s not just a coincidence, and no, I’m not just taking it personally. To quote Laura, my fellow autistic blogger, “I’m an Aspie, not a dumbass.” Interestingly enough, I do not find this dynamic on the “dad blogs” written by neurotypical fathers of autistic kids. In fact, they seem very much to want to hear my point of view, because it gives them insight into their own children.

Now, I know that there are neurotypical moms out there who read my blog for these same insights, and I am not talking about you. I am talking about the women bloggers who exclude me the way that other women have always excluded me: because I’m different, because I don’t engage in small talk, because…who knows why? Why do people exclude autistic adults? Is it too scary to think about the fact that their autistic children will one day be us? If I succeed at anything, it seems, I’m not autistic enough; but if I can’t attain that elusive and illusory goal of becoming indistinguishable from the neurotypical majority, especially as a woman, then I’m instantly devalued for being autistic. My autistic brain will never understand how people paint themselves (and us) into a corner like this, and to tell you the truth, I think that speaks very well of my autistic brain.

So, to all the people looking for a cure in order to render us “normal,” please consider what “normal” means in conversations about autism:

  • It’s “normal” to be told that I’m both not autistic enough and not welcome because I’m autistic.
  • It’s “normal” to exclude me because I don’t think like you and talk like you.
  • It’s “normal” to tell me that I can’t speak on behalf of other autistic people, because I’m not like them, but that neurotypical people can speak on behalf of autistic people, because they know better.
  • It’s “normal” to tell us that if we can speak for ourselves, we can’t be autistic, and that if we can’t speak for ourselves, we must be autistic, and therefore, other people can speak for us.
  • It’s “normal” to forget that autistic people have always been here.
  • It’s “normal” to want to make everyone just like you, without reflecting upon why you want to do that and whether your version of “normal” is something that everyone should aspire to.
  • It’s “normal” to say that your autistic child is the product of defective genes, toxic chemicals, or evil vaccines.
  • It’s “normal” to talk about us as if we’re diseased.
  • It’s “normal” to think that this kind of talk is going to do anything to create a world that is safe for your child.

If you describe your child’s way of being as the result of some sort of defect or toxin, you are not setting up your child to have any dignity or respect. At best, you’re setting up your child to be pitied, and being the object of pity is no defense against bullying, against discrimination, against becoming devalued by people who can’t think outside the “normal” box.

Someday, there will be a “cure” for autism. It will be called “pre-natal screening.” For those who can afford the test and who are willing to abort a child, autism will be a memory. But you will not get rid of us. There are many more people for whom such a test will not be available, and for whom abortion is not an option. Meanwhile, there are (and always will be) living, breathing autistic people whose lives, whose thoughts, and whose experiences are being devalued as some sort of environmental or genetic mistake.

One of those living, breathing autistic people is me. So you’ll excuse me if I’m not in a hurry to emulate your example of “normal,” but it really doesn’t seem that you have my best interests at heart.

© 2010 by Rachel Cohen-Rottenberg

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Interview at Aspitude!

September 12, 2010 Rachel Aging, Disabilities, Employment

A little while ago, I did an interview with Elesia Ashkenazy for World Autism Interviews on the subject of employment, autism, and disability. The interview is posted here on Aspitude! Please give it a read and share your thoughts.

© 2010 by Rachel Cohen-Rottenberg

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My Book Reviewed at Life in the House that Asperger Built

September 10, 2010 Rachel My Books



I’m honored that Laura Hand at Life in the House that Asperger Built has posted a wonderful review of my book. Laura and her husband are both on the spectrum, and they’re raising two kids on the spectrum. Her blog is packed with insight, wit, and intelligent discussion.

Thank you, Laura!

© 2010 by Rachel Cohen-Rottenberg

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Guest Post at Static Vox on Raising Autistic Children

September 9, 2010 Rachel Childhood, Critiques of Autism Theories, Diagnosis, Empathy, Parenting, Spectrum Pride, Theory of Mind (ToM)

I’m guest posting today over at Static Vox. My friend Stat Mama asked me to write a piece about raising autistic children, and I was happy to do so. Hope you enjoy my article!

© 2010 by Rachel Cohen-Rottenberg

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Horse-Assisted Therapy and Eye Contact

September 5, 2010 Rachel Disabilities, Eye Contact, Sensory Processing Issues

In the past couple of months, I’ve begun horse-assisted therapy at Miracles in Motion in Keene, NH. I decided to begin the work after reading about the story of Jaycee Lee Dugard, the California woman who was abducted at the age of 11 and held against her will for 18 years. One of the ways in which she and her family are working to repair trust is through horse-assisted therapy. When I first read about the therapy, I immediately realized that it was something I’d love to do. Between the trauma history of my childhood and my autistic lack of guile, trust has always been a big issue for me. Besides, I love working with farm animals and, since moving off the farm in 2008, I had been missing them a great deal. So I decided to give horse-assisted therapy a try.

Miracles in Motion exists to help children and adults with a range of goals, from trauma-related healing to working with physical, cognitive, and intellectual disabilities. As I’m finding, the therapy isn’t just helping with trust issues; it’s helping with physical balance, sensory integration, and general self-confidence as well. I absolutely love horses, but I have always been terrified of them—care of my mother, who instilled in me the fear that if I got on a horse, it would throw me off and kill me. Needless to say, I’ve overcome that fear. I’m not only able to get on a horse, but I’m also able to ride while stretching my arms in the air and twisting from side to side! If I could go to Miracles in Motion every day, I would.

A few weeks back, I had an interesting conversation with my instructors, Victoria and Frank, about how to make eye contact with horses. Victoria began by telling me that predators tend to have eyes in the front of their faces and that they stare at their prey in a very focused way. Prey animals, however, tend to have eyes on the sides of their faces, allowing for a great deal of peripheral vision that increases their safety. She encouraged me to try and look at the world like a horse by relaxing my focus and having “soft eyes” that could take in all the information in my peripheral vision. She then told me that I have to use soft eyes when looking at a horse, because if you make very focused eye contact with a horse, the horse will think you’re a predator, break eye contact, and try to get away from you. I had already noticed that making direct eye contact with a horse made the horse very uncomfortable, but I hadn’t understood why.

I immediately began to understand my own difficulties with eye contact. In American society, people tend to make eye contact somewhat aggressively. Most people do not use “soft eyes.” As an autist, I walk around the world with a very sensitive system that can feel assaulted by such things as loud music and sudden bursts of noise, nasty words, bullying behavior, deception, harshness, and so on. In other words, in the sensory and emotional world, I am more akin to vulnerable prey than aggressive predator. Even though I advocate for and defend myself in order to stay out of the role of victim, I encounter life with enough native vulnerability that what’s considered “normal” eye contact feels threatening on some level, and I instinctively avoid it. It’s not threatening in the sense that most people are predators and mean me harm; it’s threatening in a more instinctual way, such as when a horse evades eye contact with me even though I personally don’t plan to turn her into glue.

As I was talking with Victoria that day, I realized that I have no trouble making eye contact with her at all, and the more I looked into her eyes, the more I realized how soft they are. Then Frank said, “Look into my eyes and tell me how it feels.” His eyes are very soft, too, and I didn’t have a problem making eye contact with him, either. Victoria and Frank have worked with horses for most of their lives, so their eye contact is different from that of most people I have met.

The only other person with whom I can make consistent, comfortable eye contact and still manage to talk is my husband. He, too, has very soft eyes—not from being around horses, but because he’s such a gentle and non-judgmental person. I have an easier time making eye contact with family and friends than with strangers, probably because I’ve had a long enough experience of trust with them that my instincts aren’t on alert.

Any sense of being fixed by someone’s eyes, however, generally feels aversive, and I avoid it.

© 2010 by Rachel Cohen-Rottenberg

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