Archive for Empathy

Autism Parents: It’s Time to Stand Up With Us

January 8, 2011 Rachel Community, Empathy, Friendship, Marginalization, Parenting, Self-Advocacy

I’ve recently had a very painful experience on another site. It’s not the first such experience I’ve ever had, and it likely won’t be the last. I’m not going to mention the name of the site, partly because I like the people who run it, and partly because what happened is not at all particular to them. It happens all the time, and it wouldn’t be fair to call them out specifically without naming every other equally problematic situation. Similar instances are so abundant (and multiply so rapidly) that I’d never get to the end of it.

The site I’m talking about is not someone’s personal blog. What people say and do on their personal blogs is none of my business, really. I mean, if I don’t like what they say, I can just stop reading, yes? No one invited me in, and I can always find the door. However, the site in question is one of the many “autism community” sites that posts articles from folks involved with autism in one way or another. I tend to have more of an investment in those sites, because most of them actively invite participation from all comers and present themselves as being inclusive. I’m a sucker for all that. Truly.

But it’s one thing to say “We want to hear a range of perspectives” and “We’re an inclusive community” and quite another thing to make it safe for everyone to participate. When it comes to places being safe for all comers in the autism community, we Autistics tend come in last.

I’m pretty certain that most people who read my blog can come up with any number of examples of what I’m talking about. In fact, these experiences are probably the reason that a lot of people come to my blog, and others like it, in the first place. But for the sake of clarity, I’m going to be specific about the kinds of things that make places feel unsafe. In addition to references to autism as an “epidemic,” these things include, but are certainly not limited to, posts and comments in which the writer says the following:

How disappointed the person is to have an Autistic child
How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)
How altogether unfair it is not to get the child the person dreamed of
How getting an autism diagnosis is like finding out that someone has died
How autism is analogous to a fatal disease

Now, I’m not saying that it’s not okay to feel these things. Everyone is human, and everyone has the experience of life not aligning with their deepest hopes and dreams. That’s where grief comes from and, trust me, we Autistics have had these experiences—not because something is Terribly Wrong With Us, but because we once had a dream that the world would love and respect us for who we are, as full human beings with a complete set of human feelings, and the world seems bent on reminding us that it just ain’t happening.

So yeah, we totally get it. Truly. And as I said, it’s fine for people to have these feelings. What’s not fine, to my mind, is to create a forum that is supposed to be inclusive, and then allow people to say demeaning things without a hint of self-reflection or self-criticism. It’s one thing to say, “When I got my kid’s autism diagnosis, it felt like I’d just been told she had cancer, but then I realized how demeaning that is and, for the sake of my child and others like her, I’m not going there again.” I support that. But it’s quite another thing to say, “When I got my kid’s autism diagnosis, I felt like I’d just been told she had cancer, and why should such a thing happen to me?” And when ten, or twenty, or thirty, or a hundred people chime in with a version of “I know! It’s all so unfair!” without any pushback at all from anyone, it just adds insult to injury.

Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours? To tell you the truth, I don’t know and, at this point, I don’t care. Over the past couple of days, I’ve realized that I’ve got to stop asking the Why is this happening? question. It’s a bottomless pit of a question, because the answers all have to do with people’s personal issues and, if we keep waiting until people get clear on their personal issues, nothing will ever get better.

Rather than framing it as a personal issue, I’m going to frame it as an ethical issue, because that’s really what it is. So I’m not going to burn a lot more grey matter on the Why is this happening? question. Instead, I going to turn my attention to the What can we do to stop this from happening? question.

As one of my fellow Autists said to me, just imagine if someone compared his or her gay child’s coming out with a Tragedy of Epic Proportions. There are some people in the world who do consider it a Tragedy of Epic Proportions to have a gay child, but a large proportion of straight people would consider that perspective to be seriously messed up. And not only would they consider it seriously messed up, but they’d take the expression of that perspective as a golden opportunity to say so. It’s not that they’re insensitive to the feelings of people who believe that their gay children are literally headed straight to hell. The pain of that must be excruciating. It’s that they’re sensitive to the impact of this kind of talk on people in the LGBT community and what it does to the lives of living, breathing, fully formed human beings, every minute of every day.

But I have never—and I mean, never—seen any non-Autistic person on any blog, anywhere, stand up and put a stop to this kind of talk about Autistics. I’ve seen Autistic people try to put a stop to it. I’ve been one of them. But not once has any non-Autistic person backed us up by telling their fellow non-Autistics to knock it off.

Usually, when I protest, I get roundly ignored. If I do get a response, it’s generally along the lines of, “Thank you for your perspective, Rachel. It’s very valuable.” When I’m posting on a mom blog, and I share my insights about what the person’s Autistic child might be going through, I love hearing exactly that response. In fact, I only read mom blogs in which people appreciate my contribution, because those moms realize that Autistic adults can give them a perspective that no one else can. But when I’m crying out against demeaning words that harm the minds and hearts of Autistic people, telling me that what I’m saying is valuable isn’t nearly enough. Not even close.

Parents, you have to stand up against demeaning words. You have to push back. You cannot leave it to us to carry this burden alone. When I protested about the situation on the site in question, one of the site owners said, “I think it’s important that you keep coming back here to educate people.” And sure, I’m all for educating people—but it’s a bit much to put that responsibility solely on the shoulders of the beleaguered minority, and to walk away from the responsibility yourself. If you don’t understand that you need to stand up with us, how successful can my “educating” really be? And if you’re a member of the majority, and you don’t serve notice to other people in the majority that you will not tolerate people using words that batter our hearts and minds, they will feel permitted to keep using those words. Forever.

If it were only people of color who had fought for civil rights in America, we wouldn’t have any civil rights legislation at all. If it were only LGBT people who had fought for gay marriage, I woudn’t have lived in two states that have legalized it. The outrage of the majority is necessary to the civil rights of the minority. Always. We can keep your feet to the fire, but we can’t change the world alone.

Look at all the violence against women in our world. Why does it happen? We’ve had feminism, and the women’s movement, and all kinds of powerful women in all kinds of positions of authority, for many decades now, and yet, women are still being battered at an alarming rate. It’s not because women haven’t worked hard to end it. It’s because most men consider it a woman’s problem. Plenty of men do not assault women, but how many of these peaceful men actually get together and say, “We must put a stop to this. We must do everything we can to stop other men from believing that it’s perfectly all right to beat up a woman”? Precious few. They figure that they’re not doing the battering, and that’s enough for them.

It isn’t. And if you really want to make the world better for your Autistic children, it isn’t enough to respond with “Thank you for your perspective” when Autistic people say, “Stop using words that demean and belittle us.” It isn’t enough to be the one who doesn’t use those words. It’s time to start calling out the people who do. It’s time to say, “Stop using those words. They’re not just demeaning to your child. They’re demeaning to my child. They’re demeaning to any Autistic person who hears them, and they’re demeaning to Autistic people everywhere.”

In my own community, there are a number of Autistic young adults that I cannot reach. They do not want to spend time with other Autistics—not because they’re decided that they have better things to do, but because they have spent their lives so battered by the talk of pervasive wrongness and tragedy and brokenness that they are in complete rebellion against being Autistic at all. And I can’t say that I blame them. But these are not people who are “passing” for neurotypical. These are people who are struggling with everyday tasks and seriously in need of support. And yet, they want nothing to do with the very people who could include them in a supportive community.

I don’t think that every Autistic has to self-identify as Autistic; there are plenty of ways to construct identity, and as long as that identity is positive, I’m happy. But we’re not talking about people who have constructed a positive identity. We’re talking about people who are fleeing from themselves and ending up completely isolated, with neither a clear, healthy sense of self nor a welcoming group of people in which to be themselves. And why? Because they’ve heard one, long, unbroken message all their lives that they are one big tragic disappointment, and no one in their lives has put a stop to it.

I will spend the rest of my life helping Autistic people to create a strong, empowered, positive Autistic identity, free of shame and stigma. I know many people in the Autistic community who have the same commitment. And community is crucial; without it, we’re stranded. But creating a refuge is not enough. We have to create a world in which people do not feel like walking disappointments. We can talk about inclusion all we want, but if people feel that their very existence is a tragedy, they can’t even begin to avail themselves of what inclusion really means.

So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.

© 2011 by Rachel Cohen-Rottenberg

75 comments

Ten Questions That Make My Head Hurt

November 8, 2010 Rachel Ableism, Critiques of Autism Theories, Diagnosis, Empathy

Okay, so I’ve got some questions:

1. Why is it perfectly okay for a child to rock back and forth sitting on a swing, but not rock back and forth sitting on the floor?

2. Why is it perfectly okay for an adult to rock back and forth sitting in a rocking chair, but not rock back and forth sitting on the floor?

3. Why is it considered very romantic for two young people to rock together in a swing, but if they were to sit on the floor and rock together, others would very likely attempt to separate them?

4. Why is the ritual of lining things up considered a meaningless activity indicative of pathology, while the ritual of sitting for hours in a line of cars on the highway during certain weekends of the year is considered vital to observing a national holiday?

5. Why is hand-flapping considered an activity with no apparent purpose, while saying “How are you?” without actually meaning it is considered a necessary social skill?

6. Why is finger flicking called a stim while pencil twirling is called a cool thing to do when you’re bored in meetings?

7. Why is echolalia on the part of a single individual an indication of a disorder, while a ritual in which thousands of people obsessively repeat absurd statements such as “Obama wasn’t born in America” is an act of free speech?

8. Why is a passion for everything associated with Star Wars considered an unhealthy obsession, while a passion for everything associated with the New England Patriots is considered a sign of a loyal fan?

9. Why does perseverating on spinning objects buy you a trip to the developmental pediatrician, while perseverating on the debunked idea that vaccines cause autism buys you a spot on Oprah?

10. Why do neurotypical people accuse autistics of lacking empathy when we are not responsible for most of the bullying, warfare, and injustice in the world?

Do you have any answers? Or just questions that make your head hurt? Let me know.

© 2010 by Rachel Cohen-Rottenberg

37 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

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

17 comments

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

2 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

Hearing, Seeing, and the Empathic Experience

September 22, 2009 Rachel ASL, Communication, Empathy, Eye Contact, Hearing, Sensory Processing Issues, Visual/Spatial Skills

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

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

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

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

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

It’s also possible that my visual and auditory systems function in analogous ways. Just as I can hear everything very clearly, but can’t prioritize, filter, or interpret competing sounds, so I might also be seeing all the nonverbal signals very clearly, but can’t parse, separate, or interpret what’s right in front of me. When I walk into a large, noisy social gathering, I hear very little except pure, undifferentiated sound, and I overload immediately. Perhaps each person has the same effect on me visually: all the nonverbal signals get piled on top of one another until I see nothing except undifferentiated gestures and facial expressions whose cumulative impact is quite pronounced. After all, a face-to-face conversation can be an extremely intense experience for me. Perhaps I avert my eyes because I’m actually overloading on nonverbals.

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

Some people would call this kind of intuition a sixth sense, and perhaps it is. In any case, I seem to have exquisitely acute senses that bring me information in ways that I don’t always consciously understand.

© 2009 by Rachel Cohen-Rottenberg

8 comments

Welcome to the Back of the Bus

August 30, 2009 Rachel Belonging, Communication, Empathy, Grieving, Meltdowns, Myths about Autism, Spectrum Pride

I’ve been going through an especially hard time lately. I’ve been feeling very dispirited, sad, angry, abandoned, and lost. I have days in which I cry virtually all day long. And then, I have days like today, in which I feel more grounded and more focused. Perhaps it’s simply that I got a full night’s sleep last night—the first full night’s sleep I’ve gotten in months. For the past few months, I’ve been waking up at 3:45 am, and then I have trouble falling asleep again. It doesn’t matter what time I go to bed; I wake up at the same time. If I manage to fall asleep again, I have disturbing dreams that are so vivid that I don’t even realize I’m dreaming until I wake up.

A friend of mine asked whether I’m having an extended meltdown—an interesting question. I don’t think I’m having a meltdown, at least not in the usual sense. If what is happening to me is a meltdown, it’s the combined result of all the years of driving myself, all the years of finding no kindness or understanding, all the years of trying so desperately to be what I cannot be, all the years of hating myself for not being what I cannot be. If I’m having a meltdown, it’s the result of all the stressors I’ve battled against throughout my life.

But really, what I’m going through feels more like extended grieving. And perhaps that’s all a meltdown really is: an explosion of grief over the pain of overload, the pain of being alone, the pain of being invisible, the pain of living in a world that is hard to bear.

There are many layers to this kind of grief, and the one I’m focusing on now is the grief of realizing that being autistic means being a member of a hugely misunderstood and maligned minority. I used to think I’d already traversed that territory by virtue of being a Jew, but the experience I’m having now is quite different from anything I’ve encountered in the past. True, I have experienced anti-Semitism, up close and personal, and I’ve met more than my fair share of people who think that they understand Jews because they’ve read the Bible or had a Jewish friend once. I still see plenty of anti-Semitism out there in the world, but for the most part, it doesn’t feel personal. Most people who know I’m Jewish don’t see me as a caricature. They don’t rely on stereotypes when thinking about me. Until recently, I lived my life as a very visible Jew—first wearing a kippah and tzitzis everywhere I went, and then later, wearing a headscarf and long skirts. If someone were going to engage in anti-Semitic craziness, I would have known about it by now. It just hasn’t happened. 

The experience of being autistic feels very different. Now that my autism diagnosis is on the table, and I’m making changes to integrate it into the life of my family, I feel like a walking stereotype. People in Bob’s family who have known me for years say things that are completely at odds with their experience of me—that is, when they’re not ignoring me altogether. All that has changed is that I have a diagnosis of autism. That’s all. When people got upset about Bob cancelling his trip, he got responses like the following:

  • Does Rachel have as much empathy for you as you have for her?
  • Often, it’s the caretaker who suffers more than the patient.
  • You should put Rachel first, but not at the exclusion of your own children.
  • If Rachel could do everything on her own before, why can’t she now?

If instead of receiving an Asperger’s diagnosis last November, I’d had a stroke and needed to relearn everything—how to go grocery shopping, how to be out in the world without becoming disoriented, how to speak without exhausting myself, how to reconstruct my self-image, how to reconfigure my life so that it works—I sincerely doubt that anyone would have questioned my ability to empathize, accused me of taking up too much of my husband’s time, or challenged me about whether I had actually lost the ability to do simple tasks. In fact, people would have been asking about how they could help.

However, I have a diagnosis of autism, and that makes me suspect. It means that instead of writing and offering supportive words, my relatives pull back and offer almost no direct support. Apart from the email I received from one of Bob’s cousins, the great shining exception to this pattern is my 93-year-old father-in-law. He is very interested in what I write on my blog and talks to me on the phone with great appreciation and affection. Perhaps it’s because we share so much in common. We were once both very high-functioning people out there in the world, seemingly in control of things, and making a Great Success Of It All. Now, he is very frail and can’t possibly do what he was able to do even five years ago. He has had to find new ways to see himself and to enjoy the world. Despite differences in age and neurology, we are going through parallel experiences, and somehow, we’ve been able to extend ourselves to each other.

Within the family, though, he is the exception. When I consider the range of responses I’ve gotten, from silence to anger to suspicion, I find myself realizing that I have now joined the ranks of the invisible, the misunderstood, the maligned, and the burdensome. This time, it’s personal. This time, it’s in the family. This time, despite the fact that I used to ride up front, I’ve been told to go to the back of the bus and stay there. What else does it mean when someone considers me a patient rather than a wife? What else does it mean when, instead of showing compassion for what I’ve lost, someone accuses me of choosing to become disabled? What else does it mean when people direct their words to Bob and not to me, as though talking to me is suddenly an uncomfortable (and therefore impossible) task? It all signals an unwillingness to encounter me as I really am and to show me the respect due to any human being. It means that I have second-class status. It means that I am expected to justify myself at every turn, to reassure people that I will not make them uncomfortable, and to let them know how sorry I am for what a burden I have placed on their shoulders.

Of course, I categorically reject all of this nonsense. I will not sit in the back of the bus, and if anyone expects me to, I will not negotiate. I will not justify myself. I will not explain myself. I will not apologize for myself. I will just get off the bus and walk, in my own direction, and at my own pace. Is it lonely? Hell, yes. But, as Frederick Douglass wrote:

I prefer to be true to myself, even at the hazard of incurring the ridicule of others, rather than to be false, and to incur my own abhorrence. 

© 2009 by Rachel Cohen-Rottenberg

8 comments

A Critique of the Empathizing-Systemizing (E-S) Theory of Autism

July 7, 2009 Rachel Critiques of Autism Theories, Empathy, Girls and AS, Mainstream Theories of Autism, Mind-Blindness, Stimming, Theory of Mind (ToM), Women and AS

In his 2009 paper Autism: The Empathizing–Systemizing (E-S) Theory, Professor Baron-Cohen expands upon his Extreme-Male-Brain theory of autism. Unfortunately, he does not come any closer to understanding autism than when he started.

A Series of Incorrect Assumptions

Baron-Cohen begins the paper by asserting that the mind-blindness theory of autism neatly explains all the social difficulties encountered by autistic people. From this assertion flows a litany of incorrect conclusions:

1. Baron-Cohen asserts that autistic people have an impaired Theory of Mind (ToM), which he defines as “the ability to put oneself into someone else’s shoes, to imagine their thoughts and feelings.” (Baron-Cohen, 68-69)

All I can say is: Give me a slight break. The everyday experience of many autistic people, all across the spectrum, contradicts the professor’s theory. Many of us experience such a high degree of empathy that we are constantly putting ourselves in other people’s shoes and trying to see all sides in any controversy or conflict. Many of our problems with sensory and emotional overload derive from an excess of this ability, not a deficit.

2. Because we lack a proper ToM, we have trouble knowing when we are hurting someone’s feelings.

From my contact with autistic people, it’s clear to me that our empathy leads many of us to constantly question the impact of our words. While I am far from perfect, choosing my words carefully may very well rank as one of my Aspie obsessions. However, the professor believes that “the typical 9-year-old can figure out what might hurt another’s feelings and what might therefore be better left unspoken. Children with Asperger syndrome are delayed by around 3 years in this skill.” (Baron-Cohen, 69)

Choosing my words carefully, so as not to give offense, I wish to say to the professor: “Simon, my friend. (May I call you Simon? I’m not sure, since I can’t read your mind.) You say that autistic people can’t properly put themselves into the shoes of another person. Let me respond as gently as I can: Those words were much, much better left unspoken. They hurt me. And when other people believe what you’re saying, your words cause autistic people no end of trouble. So, the next time you feel tempted to say such things, turn off your computer and have a good meal. You’ll feel better.”

3. Baron-Cohen dismisses studies that fail to find any ToM deficits in autistic people:

“[S]ome studies have failed to find any evidence of a ToM deficit in ASC [autism spectrum conditions], though this may be because among high-functioning, older individuals the tasks need to be sufficiently subtle and age-appropriate to avoid ‘floor effects.’” (Baron-Cohen, 70)

The results “may” be thrown off because of the presence of “high-functioning,” older adults? Didn’t Baron-Cohen attempt to find out who actually participated in these studies? Isn’t that part of writing a research paper? In any case, we “high-functioning” types do not skew test results by excelling at easy tasks. We help the professionals arrive at the proper results by articulating what’s going on.

4. After spending a fair amount of time defending his mind-blindness theory, the professor adds a new and even more incorrect component to it. He “broadens” of the concept of ToM to include an empathetic response:

“Most people regard ToM as just the cognitive component of empathy in that it simply involves identifying someone else’s (or your own) mental states…However, missing from ToM is the second component of empathy, the response element: having an appropriate emotional reaction to another person’s thoughts and feelings. This is referred to affective empathy.” (Baron-Cohen, 71)

Baron-Cohen goes on to say that, in addition to not empathizing well, we don’t know how to respond to someone even after the person tells us what‘s wrong.

News flash: Once someone tells me how he or she feels, I don’t usually have a problem with an empathetic response. Sometimes, I’ll make sure that my response is welcome, out of respect for the other person’s boundaries. For instance, if a person is crying, I might ask whether the person would like a hug, or whether the person would like to talk. Some people want hugs, and some people want to be left alone. I consider it courteous to ask. Once I know people fairly well, however, and I know what works for them, I simply respond. Just ask my husband, my daughter, my daughter’s friends, my friends, my former co-workers, my neighbors, and all the animals I’ve ever helped care for in various stages of illness.

Well, I guess you can’t ask the animals, but you get the idea.

Extending the Extreme-Male-Brain Theory

Despite our supposed deficits in the areas that make people truly human, there’s good news in store. Building on his Extreme-Male-Brain theory, Baron-Cohen posits that while we have difficulty Empathizing (E), we’re not too bad at Systemizing (S). If you remember, we have Extremely Male Brains, so the fact that we’re good at systemizing should not come as a surprise. I mean, I’m sure that those of you with systemizing brains already had that one all figured out, didn’t you?

Here’s the good news in the professor’s own words:

“According to the empathizing–systemizing (E-S) theory, autism and Asperger syndrome are best explained not just with reference to empathy (below average) but also with reference to a second psychological factor (systemizing), which is either average or even above average.” (Baron-Cohen, 71)

Hurrah for us! We’re average. And sometimes, we’re above average. It’s a dream come true.

And in case there is any doubt as to those tasks that we’re so, um, average at doing, here is the professor’s definition of systemizing:

“Systemizing is the drive to analyze or construct systems. These might be any kind of system. What defines a system is that it follows rules, and when we systemize we are trying to identify the rules that govern the system, in order to predict how that system will behave (Baron-Cohen 2006). These are some of the major kinds of systems: collectible systems (e.g., distinguishing between types of stones), mechanical systems (e.g., a video-recorder), numerical systems (e.g., a train timetable), abstract systems (e.g., the syntax of a language), natural systems (e.g., tidal wave patterns), social systems (e.g., a management hierarchy), and motoric systems (e.g., bouncing on a trampoline). In all these cases, you systemize by noting regularities (or structure) and rules.” (Baron-Cohen, 71)

I had no idea that jumping on a trampoline made me a systemizer or that it was evidence of autism. I am so excited! I used to jump on a trampoline ALL THE TIME when I was a kid.

But there’s a catch. In the next sentence, Baron-Cohen makes a statement that suggests that none of us are autistic to begin with: “So it is the discrepancy between E and S that determines if you are likely to develop an autism spectrum condition.” (Baron-Cohen, 71)

Likely to develop an autism spectrum condition? WHAT? You mean, I wasn’t born with it? Wow. If only they’d given me empathy lessons in grammar school, rather than letting me bounce on that stupid trampoline, I’d be normal today.

I wonder whether it’s too late to sue the school district.

Misunderstanding the Purpose of Stimming

Not surprisingly, the train goes further and further off the track as the article continues. Here is Baron-Cohen’s list of systemizing behaviors in classic autism and Asperger’s Syndrome. The Asperger’s behaviors are in italics. (Baron-Cohen, 74)

Sensory systemizing Tapping surfaces, or letting sand run through one’s fingers 

Insisting on the same foods each day
Motoric systemizing  Spinning round and round, or rocking back and forth

Learning knitting patterns or a tennis technique
Collectible systemizing  Collecting leaves or football stickers

Making lists and catalogues
Numerical systemizing  Obsessions with calendars or train timetables

Solving math problems
Motion systemizing  Watching washing machines spin round and round

Analyzing exactly when a specific event occurs in a repeating cycle
Spatial systemizing       Obsessions with routes

Developing drawing techniques
Environmental systemizing  Insisting on toy bricks being lined up in an invariant order

Insisting that nothing is moved from its usual position in the room
Social systemizing  Saying the first half of a phrase or sentence and waiting for the other person to complete it

Insisting on playing the same game whenever a child comes to play
Natural systemizing  Asking over and over again what the weather will be today

Learning the Latin names of every plant and their optimal growing conditions
Mechanical systemizing  Learning to operate the VCR

Fixing bicycles or taking apart gadgets and reassembling them
Vocal/auditory/verbal systemizing Echoing sounds

Collecting words and word meanings
Systemizing action sequences Watching the same video over and over again

Analyzing dance techniques
Musical systemizing Playing a tune on an instrument over and over again

Analyzing the musical structure of a song             

 

Now, it seems to me that if a neuro-typical person were doing these kinds of activities, another neuro-typical person might (perhaps correctly) assume that the person was systemizing because his or her brain was structured that way.

However, it’s always ill advised to draw neuro-typical conclusions by watching the behavior of autistic people, because autistic people experience the world in a completely different way. Therefore, we might have reasons for our “systemizing” behavior that have nothing to do with having innately “systemizing” brains.

For example, most autistic people would recognize many of the activities in Baron-Cohen’s list as stims: tapping fingers, letting the sand slide through your fingers, rocking, watching something go round and round, putting things in a certain order, watching the same video over and over, playing a tune on an instrument over and over, and so forth. Baron-Cohen does mention the subject of stims, but he spectacularly misinterprets their purpose:

“[W]hen the low-functioning person with classic autism shakes a piece of string thousands of times close to his eyes…the E-S theory sees the..behavior as a sign that the individual ‘understands’ the physics of that string movement.” (Baron-Cohen, 74)

The E-S theory may see the behavior in that way, but I’m not convinced that many autistic people do. The professor needs to watch Amanda Baggs’ In My Language video for a crash course on how many unusual reasons we can have for all the interesting things we do.

About that string, Baron-Cohen continues:

“He may for example make it move in exactly the same way every time. Or when he makes a long, rapid sequence of sounds, he may know exactly that acoustic pattern and get some pleasure from the confirmation that the sequence is the same every time. Much as a mathematician might feel an ultimate sense of pleasure that the “golden ratio” ((a + b)/a = a/b) always comes out as 1.61803399. . ., so the child…who produces the same outcome every time with his repetitive behavior, appears to derive some emotional pleasure at the predictability of the world. This may be what is clinically described as ‘stimming’ (Wing 1997).” (Baron-Cohen, 74-75)

To Baron-Cohen, the child “appears” to derive some emotional pleasure at the predictability of the world. The only person who could draw this conclusion would be someone who experiences the world as a predictable place. I can’t vouch for any other autistic person, but I do not experience the world in that way. Far from it. The world feels chaotic to me.

When I stim, I’m not taking pleasure in the predictability of the world. I’m taking refuge from the chaos of the world. I’m soothing my very sensitive nervous system by a) moving my body in comforting ways, such as when I rock or toe-walk or b) creating some sort of tangible order, such as when I arrange books by subject or organize beads by color, shape, size, and texture. To soothe myself, I’m creating what I can’t ordinarily perceive. I’m saying, in the words of Mrs. Ramsay in Virginia Woolf’s To the Lighthouse, “Life stand still here.”

But This Theory is So Good for Us

In singing the praises of his E-S theory, Baron-Cohen doesn’t hesitate to announce how much it will help autistic folk and our loved ones. For example, he speculates that the theory will lead to interventions that will help us cope in the world:

“[This] theory is giving rise to novel interventions, in particular using the strong systemizing to teach empathy, for example, presenting emotions in an autism-friendly format (Baron-Cohen 2007b; Golan et al. 2006).” (Baron-Cohen, 70)

When I saw the phrase “presenting emotions in an autism-friendly format,” I was hoping that Baron-Cohen meant “quietly, slowly, and respectfully.” (Hey, a girl can dream, can’t she?) Unfortunately, that’s not what he meant:

“The DVD Mind Reading…presents actors posing facial expressions such that people with autism can teach themselves emotion recognition via a computer. This involves taking the quite artificial approach of presenting mental states (such as emotional expressions) as if they are lawful and systemizable, even if they are not (Golan et al. 2006).” (Baron-Cohen, 70)

I see. So we’re going to use computers to understand emotion in a systematic way, even though emotions do not follow any natural laws. Well, since our Extremely Male Brains make us pretty much like computers anyway, why not? And given that we don’t understand deception, we’ll believe anyone who tells us that we can learn about emotions using a computer program, won’t we? It’s perfect.

But it gets better, at least at first glance:

“E-S theory destigmatizes autism and AS, relating these to individual differences we see in the population (between and within the sexes), rather than as categorically distinct or mysterious. For many decades, the diagnosis of autism was one that many parents dreaded, as it suggested their child was biologically set apart from the rest of humanity in lacking the basic machinery for social engagement and in suggesting autism is a disease of the brain. The E-S theory focuses not just on the areas of difficulty (empathy) but also on the areas of strength (systemizing) in ASC, and views ASC as a difference in cognitive style that is part of a continuum of such differences found in everyone, rather than as a disease.” (Baron-Cohen, 73)

Destigmatizing is good. But is that really what Baron-Cohen is doing here? I don’t think so.

1) He attempts to destigmatize autism by putting us into categories that the general population can understand. As opposed to being “categorically distinct,” we are now different in the same, familiar way that men and women are different. Men systemize, and women empathize. We’re just really manly men—and, er, women. Don’t you feel better now?

2) He completely misses the point that autism and AS are categorically distinct from other neurological kinds of wiring.

We are not just interesting variations from the norm, but people with a fundamentally different way of seeing and experiencing the world. We’re non-normative human beings. Being distinct is not the same as being dangerous or inhuman. To take away our distinctness in order to destigmatize autism only plays into the fears of the general population. It doesn’t allay those fears at all.

3) While at first glance, I was happy to see that he rejects the world “disease,” I find myself dismayed that Baron-Cohen does not replace it with anything that sounds any better.

After all, autism may not be “a disease of the brain,” but much of his work is an attempt to suggest that we are, in fact, “biologically set apart from the rest of humanity in lacking the basic machinery for social engagement.” Isn’t that the point of saying that we are innately poor at empathy and the social skills that depend upon it? Playing up our “systemizing” skills while telling people that we do not care about them is hardly a giant leap forward.

4) While Baron-Cohen appears to celebrate our “systemizing” strengths as a way to bring us into the light of human dignity, he forgets that some of us flunked calculus, can’t disassemble or reassemble gadgets, and don’t care in the least about the Latin names of anything. Autistic women, in particular, do not present with the same kinds of traits as the majority of autistic men.

What is to be done with autistic people who have “difficulties” with both the feminine ability to empathize and the masculine ability to systemize? Should we make them use computers or line things up in rows until they learn to systemize properly? After all, it’s pretty clear that the empathy thing is not even worth trying.

I have a better idea. Let’s tear up Baron-Cohen’s theory and start all over again. After all, as he says toward the end of his paper:

“One criticism of the E-S theory is that the evidence base for it is still quite limited.” (Baron-Cohen, 73)

Ya think?

© 2009 by Rachel Cohen-Rottenberg

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The “Intense World Syndrome” Theory of Autism

June 2, 2009 Rachel Alternative Theories of Autism, Anxiety, Empathy, Executive Function, Eye Contact, Mind-Blindness, Perseveration, Sensory Processing Disorder (SPD), Sensory Processing Issues, Spectrum Pride, Theory of Mind (ToM)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Makes sense to me.

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

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

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

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

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

I think that’s right.

Now for the fun part: upending the accepted theories.

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

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

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

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

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

I think they’re onto us now.

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

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

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

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

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

Looks like word is getting out.

© 2009 by Rachel Cohen-Rottenberg

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