Archive for September 28, 2011

A Protest March is Not Dialogue

I’ve been doing some more thinking about the Self-Advocate/Parent Dialogues on The Thinking Person’s Guide to Autism.

Like many people, I’ve felt frustrated, angry, and saddened by what I’ve watched go on there. And I’m realizing that it’s because, each day, I show up wanting peaceful dialogue, and each day, I find myself in the middle of a protest march that keeps turning into a brawl. It feels exactly like wandering into a demonstration and counter-demonstration in which the police barricades, put in place to keep people from tearing one another apart, keep getting overrun.

Maybe it’s just me (and judging from the events of the past week, I’m beginning to think that it may very well be just me), but there are things that I’ve always expected from a dialogue, and that I’ve always assumed were both necessary and reasonable:

  • Expressions of respect for the other party
  • Listening and responding rather than reacting
  • Speaking with civility, even in the midst of great anger
  • Asking questions that go to the heart of intent
  • Equal time and representation for both sides to express their perspectives
  • Care and concern for individuals across division
  • An ability to acknowledge errors on both sides

But here are the things that I’m seeing in the The Dialogues:

  • Yelling. And I mean yelling that happens IN ALL CAPS because otherwise, MAYBE other people won’t KNOW how WRONG they OBVIOUSLY ARE.
  • People taking their pain out on one another. I see parents doing it because they feel stressed and abandoned and get to do it everywhere else in the autism world, and I see autistics doing it because they feel stressed and abandoned and never get to do it anywhere else in the autism world. On behalf of both parties, it hurts me to watch.
  • Accusations of ill-intent along the lines of “You’re just trying to derail the conversation,” as though accusing someone of derailing the conversation — rather than bringing the conversation back on point — isn’t derailing the conversation.
  • Lots and lots of sentences beginning with “You,” such as “You just refuse to understand” and “You need to park your privilege at the door” and “You have no right to be upset about whatever it is you’re upset about, because it’s irrelevant.”

Anyone here ever try to carry on a relationship in which both parties start every sentence with “you” rather than with “I”? It doesn’t go well. Telling the other person everything he or she has done wrong, over and over, instead of talking about its impact on you and what you want to see change, usually doesn’t get you very far. It’s quite cathartic, but in the end, it damages the relationship, and then there is repair work to do on top of the problems that were there in the first place.

  • People laughing derisively at each other, judging each other, attacking each other, and accusing each other of saying things they never said and meaning things they never meant.
  • People treating one another as walking incarnations of all of life’s injustices, rather than as actual people with feelings and thoughts and tears. It’s easy to take a swipe at an incarnation of life’s injustices. It’s quite a bit more difficult to do it when you realize that a person is standing in front of you.
  • People getting their feelings trampled underfoot on the road to — what? Making life better for all of us? Excellent. But there’s one little problem: I’m not all that interested in creating change with people who think that’s the way to go about it — for the simple reason that I fear for what the world will look like when we get there.
  • People being unable to acknowledge any wrongdoing, either because they’re oppressed and the wrongs done them are so much worse than what they’ve done to others, or because as long as the cause is right, who cares? So, unlike most people who seem to have moved on as though nothing happened, I’m still pissed as hell at what happened to Emily, and I’m still waiting for someone else to sober up and say, “My God, we’re so sorry. You didn’t deserve that.” And I can feel, in my bones, just how irrelevant people seem to think that is. Who cares about Emily when we’re talking about oppression?

I do. It’s not that I think that Emily is still hurting. It’s the failure to take responsibility that concerns me so much. If we can’t engage in self-reflection and mend things that are broken in our community, how can we have a prayer of mending a broken world?

I’m having memories of my days in Berkeley, when I’d go to gatherings about social justice issues, hoping to listen to a few speakers and have a reasoned discussion, only to watch people yell and punch holes in walls and talk about how it wasn’t such a big deal because people were suffering in the world. Yeah, the wall doesn’t suffer, but the people in the room who watch it happen do. It’s scary, it’s intimidating, and it’s not conducive to dialogue.

Now, I can hear the objections to everything I’m saying here: “Well, we’re oppressed. You can’t expect us to be civil and well-spoken about it. There is too much at stake. And besides, we’re angry. And besides, why don’t you talk about what we’re saying rather than about how we’re saying it?”

All I can say is that, in a protest march, or in a diatribe, you have to yell and say what you have to say, however you want to say it. And I share your suffering, and I share your desire to be loud about it, and I want change to happen right now, just as you do. I’m a member of two minority groups that have suffered bitterly for generations upon generations, so I can hardly be accused of not getting it.

But a dialogue involves something very different. A dialogue involves saying things in a way that other people can hear them. This is not an argument from tone. This is a realistic appraisal of how to work around people’s defenses and get them to hear us so that we can make change. We can’t get people to listen to us by telling them that we’re right and they’re wrong, over and over. They’ll either put up their defenses and start beating up on us in the same way, or they’ll go away altogether. Either way, we’ve lost much-needed allies.

When I look at history, I see oppressed people creating change by forming alliances with the majority, and by doing it in a way that takes the moral high ground. The civil rights movement finally had its day because Martin Luther King, Jr. invited white folk to join him in taking that moral high ground. You had people who had watched their loved ones lynched and raped, but they came together, in the spirit of peaceful dialogue and a yearning for justice, with representatives of the privileged class whose members had done the lynching and raping.

That’s what I keep hoping for: that we carry this forward with some discipline, some respect for the perspective of the other, and some trust that we can make change by being the change we want to see. But after the events of the past week, my sense is that we’re a long, long way from there.

© 2011 by Rachel Cohen-Rottenberg

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Impact, Intent, and Dialogue in the Autism Community

This post discusses an issue arising from the Parent/Self-Advocate Dialogues that began last week on The Thinking Person’s Guide to Autism.

For those who haven’t been following the Dialogues, a rather contentious argument arose about a Twitter exchange between Rob, one of the participants, and Emily, one of the editors, in which it appeared to many people that Emily had ill intent. As it turned out, she did not – quite the contrary – and the ensuing conflict was based on a misintepretation. Given that Twitter does not allow for much in the way of nuance or explanation, a misinterpretation wasn’t all that surprising. Twitter probably wasn’t the best medium in which to attempt a conversation about a serious issue in the first place.

K over at Radical Neurodivergence Speaking has a great post up about the whole incident, with a very good discussion of why the larger social/emotional/historical context in which it happened made misinterpretation almost inevitable. If you aren’t familiar with the situation and want to have some idea of what the rest of this post is about, take a look at K’s piece.

I originally began my post as a comment on what K had written. But as I wrestled with my feelings about the situation, I began to see larger issues that I want to explore here.

In the context of a world in which autistic people are so often rendered invisible, I understand why people interpreted Emily’s words as they did. We’re used to people not listening to us, and when it appeared to be happening again, people drew conclusions based on life experience. I completely understand it, and for anyone who doesn’t, I hope that K’s post makes the reasons clear. From the outset, I did not interpret Emily’s words the way that others did, but I understand why other people arrived at a different conclusion.

That’s not what troubles me.

What troubles me is that, despite Emily being a respected member of the community with an impressive track record on advocacy issues, the rush to judgment about her intentions was so swift. I watched it happen in the comments section to the Dialogues, and I kept wondering when someone was going to say, “You know, given that it’s Emily we’re talking about, we must be missing something. Perhaps we should ask for clarification.” Instead, I saw commenters looking at the Twitter exchange and then drawing very pejorative conclusions about Emily’s intent – that she was attempting to derail dialogue, to silence autistics, to encourage dismissal, and so on – without asking what her intent actually was, and without considering the fact that the conclusions being drawn and her track record were so much at odds.

In the context of dialogue, the failure to ask about intent worries me, because dialogue involves a willingness to ask questions in order to discern intent. Without that, a crucial part of the picture is missing, and dialogue becomes unproductive.

In fact, a failure to ask about intent ultimately discourages dialogue. Because of the pejorative things said about Emily’s intentions, it’s taken me days to post my feelings about the situation. For the first time since I’ve started blogging, I’ve felt inclined to stay silent about my feelings regarding an issue I care about. And if someone like me could feel that way, I can only imagine what people new to the community must have felt while they were watching the whole situation unfold.

As I’ve struggled with speaking to the issue, I’ve been asking myself questions along these somewhat worrisome lines: What will happen if people misread my words as an attack? What will happen if they think I’m dismissing the pain involved for everyone? What if they think I am assigning ill intent to them?

Will they ask me to clarify my intent? Will they try to understand where I’m coming from? Or will they assume ill intent where none exists?

It’s taken me four days to say: I hope they’ll read carefully. I hope they’ll consider who they know me to be. I hope they’ll ask if something is unclear. But I really can’t worry about that.

I know that this whole debacle came out of the pain that so many of us carry, and out of the injustices we’ve suffered. I do. When people read words that appear to be dismissive – even if they are in no way intended to be dismissive – the impact is going to be profound. That reality has to be part of these conversations. And what also needs to be part of these conversations is an understanding that it’s often very ill-advised to draw a conclusion about intent based on impact, especially in a dialogue. When that conclusion is wrong, it can cause a lot of hurt. As a community, we have a responsibility not just to explain why these misinterpretations happen, but also to acknowledge the impact on the person who was misinterpreted.

Emily had people saying some pretty awful things about her thoughts and intentions last week. She’d have to be made of teflon not to feel hurt while it was happening. So while it’s crucial that we talk about the impact of power and privilege and context and silencing and dismissal on us, it’s also crucial that we acknowledge what happens to individuals at the epicenter of these blow-ups, and about the ways in which these kinds of things can fracture a community and discourage dialogue.

So I’m doing now what I should have done in the Dialogues thread last week: I’m speaking up. I hope that people will understand that I’m doing so because I care about the future of dialogue in our community, and because I care about our community being a safe space. If this sort of thing can happen to Emily, it can happen to any one of us.

© 2011 by Rachel Cohen-Rottenberg

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Guest Post Series: Widening the Disability Perspective

This month, I’m honored to publish a guest post from William Peace, a cultural anthropologist and writer interested in disability studies, body art and modification, and the history of anthropology. If you haven’t happened upon his blog, Bad Cripple, I highly recommend it.

Although Bill’s disability is visible and mine is not, his guest post touches on a number of issues with which I deeply identify. I think you will, too.

Identity and Disability
William Peace

I am a crippled man. I am a proud man. Hear me roar. Yes, I am ripping off the 1970s women’s movement song “I am Woman” by Helen Reddy and Ray Burton. Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis. I never think about a cure to spinal cord injury, walking or running. Such thoughts are for others; people who without question accept that walking is the only means of locomotion. As a result of my paralysis and wheelchair use I am a member of a minority group even if the Supreme Court does not agree with me. I am often asked about cure, about walking, about wheelchair access, about sex, about work, about family. These questions make one thing clear–my privacy is not respected. I am not respected. I have a stigmatized identity. Hence, well meaning people ask, “Wouldn’t you want to be cured?”, or “Wouldn’t your life be easier if you were not paralyzed?” These types of questions are so far off base it boggles my mind. The people that ask me these questions never think why. Why is life with a disability such as paralysis difficult? The answer is obvious to people with a disability. Our physical and social environments are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.

I am intimately familiar with the concept of identity. Identity is of central importance to anthropologists. It is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others—non-disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem—one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability.

So why is identity so important to people with a disability? Disability identity is important because it will lead to social debate and careful consideration of disability well beyond the narrow way it is currently perceived. In the Foreword to Simi Linton’s ground-breaking text Claiming Disability, Michael Berube noted:

If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the “humanities.” And if we do not imagine “disability” as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy.

Like most people, disabled and non-disabled, I did not always think this way. Disability is after all the only minority group you can join—and not by choice. What connects all people with disabilities is a shared identity and the routine and unacknowledged violation of our civil rights. Disability scholars call the prejudice people with disabilities encounter ableism. While we people with a disability certainly understand ableism is a form of oppression, when we confront others and assert ourselves, we are classified as bitter. I am routinely told I have a “chip on my shoulder.” When told this, I sarcastically agree—hence I identify myself as a bad cripple—one not afraid to assert my civil rights. If this puts a chip on my shoulder, then I plead guilty. This takes some guts; we people with a disability are expected to be subservient, content with what society is willing to dole out for us. When we do not adhere to our prescribed role, our presence is not wanted. The type of disability is not relevant—it is a variation on a single belief that is deeply ingrained in schools, businesses and our culture. One person has railed:

People have a great deal of prejudice about autism & other developmental disabilities. I’ve been bullied out of activities and classes because I am autistic; I’ve been discouraged from even trying others. People and professionals who are familiar with autism but unfamiliar with me assume that I am less capable of many things I am—usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks—having to prove my humanity & my individuality over and over and over again is exhausting (Timetolisten.blogspot,com).

I would venture to say every person with a disability can relate to the quotation above. I have repeatedly been lauded for the ordinary and told I am amazing. Conversely, I have been told I cannot do many ordinary things. This is nothing short of dehumanizing. It is also why all people with a disability should embrace an identity closely linked to disability with one proviso: disability identity is not defined by a given disabling condition or body centered feature. Identification here is not a medical diagnosis or arbitrary label. With an identity tied to disability it is logical to conclude our experiences are similar. The prejudice we encounter is socially sanctioned and deadly. With this realization I shudder to think of how many dreams and ambitions have been crushed. No one would tell a non-disabled child he or she cannot do something. That is an educational anathema. But this is exactly what happens to people with a disability.

Frankly, I have had it. I will not tolerate being told what I can and cannot do. I know with an identity tied to disability, by being proud and disabled, I can resist and thrive.

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Unwarranted Conclusions and the Potential for Harm: My Reply to Simon Baron-Cohen

I want to thank Simon Baron-Cohen for taking the time to respond, in his September 10th post on the Autism Blogs Directory, to one of my early pieces on autism and empathy. I am very gratified that he did so.

Unfortunately, I found his response quite troubling. While there are a number of points that concern me, I’m going to focus on the aspects of his piece that speak directly to the most pressing issues.

The problematic nature of the test instruments

My first concern is that while Simon points to studies proving empathy and theory of mind deficits in autism, he does not address any of the many valid critiques of the test instruments themselves. For example, he chose to respond to a piece on the Empathizing-Systemizing (E-S) theory that I wrote over two years ago, when I was newly diagnosed and at the very beginning of formulating my thinking on the issue, rather than speaking to my recent systematic critique of the numerous flaws and biases in the Empathy Quotient (EQ) test or to my earlier piece on the Theory of Mind test. Both critiques discuss serious problems with the primary assessment tools on which his conclusions are based. If he would like his work to be better informed by the ways in which autistic people experience our sensory and emotional lives, and by the ways in which the test instruments fail to take account of the complexity of our experiences, I invite him to read both pieces, along with numerous other critiques and personal accounts on the Autism and Empathy website.

Simon also fails to mention that the false belief test used for the past 30 years to assess theory of mind in autistic children relies upon verbal interaction and language processing, areas in which autistic people are understood to have serious difficulties. In fact, in a 2005 paper, Morton Ann Gernsbacher and Jennifer L. Frymiare point out that the syntactic form of the questions posed by the test is one of the most complex in the English language. The authors go on to cite a study showing that performance on false belief tests correlates with language ability in children with and without autism. In fact, when autistic and deaf children are given a false belief test administered visually rather than verbally, they score higher than non-autistic hearing children: “If one creates a false drawing task that tests theory of mind without reliance on language, one finds that children with autism and children with deafness actually outperform children with normal hearing (Peterson, 2002).”

The misleading nature of the term “cognitive empathy”

My issues with Simon’s work go far beyond the problematic methodology of the test instruments, however, and extend to his use of the term “cognitive empathy” to describe an inability to read and to interpret nonverbal signals. If, as Simon asserts, “people with autism are very capable of an empathic response” when those around us verbalize (or otherwise make clear) their feelings, then our difficulties lie not in the area of “affective empathy,” but in the area of what he calls “cognitive empathy.” By this reasoning, Simon’s theory of autism as an empathy disorder rests on the latter term.

To make clear the misleading nature of the term “cognitive empathy,” a brief summary of Simon’s definitions is in order.

In The Empathy Quotient: An Investigation of Adults with Asperger’s Syndrome or High-Functioning Autism, and Normal Sex Differences, Simon and his colleague Sally Wheelwright draw on a definition of cognitive empathy as “using a ‘theory of mind’ (Astington, Harris, & Olson, 1988; Wellman, 1990) or ‘mindreading’ (Baron-Cohen, 1995; Whiten, 1991).” In Theory of mind in normal development and autism, Simon defines the term “theory of mind” and specifically describes it as a core component of humanity that is impaired in autistic people:

A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993). By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds. Difficulty in understanding other minds is a core cognitive feature of autism spectrum conditions. The theory of mind difficulties seem to be universal among such individuals.” (Baron-Cohen, 3)

In his response to my post, and in numerous other pieces of writing, Simon asserts that both theory of mind and cognitive empathy rely upon an ability to see and to read nonverbal signals. If a person can’t do so, but relies upon verbal language or another form of communication, then that person has an impairment in theory of mind and in the cognitive empathy that depends upon it, resulting in a deficit in “one of the quintessential abilities that makes us human.”

It’s my contention that calling a physical inability to see and to interpret nonverbal signals a failure of any kind of empathy is to make an unmerited interpretive leap. After all, people who are blind cannot see and interpret nonverbal signals — they rely upon spoken language and/or Braille text — and yet, to my knowledge, no one has alleged that blindness is a low-empathy condition. Blind people come to understand the mental states of other people through other means, just as autistic people do. And yet, for an autistic person, a problem seeing and interpreting visual phenomena — and the necessity of taking alternative routes to acquiring the information expressed by such phenomena — is the basis for defining autism as an empathy disorder.

Please note the double standard at work.

Making a processing disability an empathy disability

When it comes to reading nonverbals, some sighted autistic people report not being able to see the signals at all. Others, like myself, receive a great deal of information from the eyes and face, but cannot parse the signals separately or intuitively. Perhaps we are really talking about the same thing here; after all, if I can’t separate the signals, the net effect is that I can’t see them as signals in the normal sense of the word. In any case, in my own experience, the problem is that all of the information from the eyes and face comes in very quickly. And while I cannot translate any of the more subtle nonverbals and use them in real time, my affective empathic response is quite acute. So, while I always understand that something is up, I may not always be able to discern exactly what it is at that very moment.

My visual processing of nonverbal signals is exactly analogous to my auditory processing of verbal speech: if you put me in a sound-rich environment, in which multiple conversations are going on at once, I can physically hear the sounds and the vocal tones, but I cannot separate the words from one another in order to understand and respond to them. The message becomes garbled.

No one has ever suggested that, because of my difficulties with auditory processing, being unable to understand what someone says to me verbally in a noisy room is evidence of low empathy. But when, because of my difficulties with visual processing, I can’t understand what someone says to me nonverbally, it’s adduced as prima facie evidence of a condition defined by low empathy.

That is a most illogical and unscientific conclusion.

If I cannot see nonverbal signals or parse them in real time, that is the sign of a visual processing issue, not the sign of an empathy disorder.

If I have to devote nearly every ounce of processing energy I have to decoding the words someone says to me, and therefore cannot afford to divert it for receiving visual information from the person’s eyes and face, that is the sign of an auditory processing issue, not the sign of an empathy disorder.

If, when I go to the market, I cannot stop and ask after people’s welfare because I have to focus on getting my shopping done before the sensory overload becomes disorienting and painful, that is the sign of a sensory processing issue, not the sign of an empathy disorder.

And if, when bombarded by sensory and emotional information, I find myself unable to express my empathy in real time and respond in any kind of conventional way, that is the sign of an information processing and communication issue, not the sign of an empathy disorder.

To define any of these issues as the signs of an empathy disorder is to take a physical disability and raise it to the level of a failure of humanity.

Hurt feelings, oversimplifications, and The Science of Evil

Suffering is nearly always the consequence of ascribing an inborn dearth of humanity to any child born to two human parents. And this is why any assertion that autistic people are born with a deficit in a core component of humanity is so terribly, terribly troubling to me.

I’m not talking about someone hurting my feelings, as Simon implies. What I’m concerned about are ill-conceived definitions and unwarranted conclusions that have the potential to cause tremendous suffering for autistic people at the hands of the larger world.

So, when Simon takes processing and communication difficulties and makes them evidence of an empathy disorder, then I have a problem.

And when, in a post for the Autism Blogs Directory, his words do not reflect the manner in which he describes our capacity for affective empathy in his latest book, my concerns only increase.

Consider the following: In his September 10th post, he provides a chart to explain the way that he profiles autistics and psychopaths in his recently published popular science book The Science of Evil (entitled Zero Degrees of Empathy in the UK). The chart in his blog post shows psychopaths and autistics with profiles that are a mirror-image of each other: psychopaths are positive for cognitive empathy but negative for affective empathy (they can intuitively read how people are feeling, but they don’t care), while autistics are negative for cognitive empathy and positive for affective empathy (we can’t intuitively read how people are feeling, but once we understand that a person is upset, we’re upset, too).

However, the information on this chart does not accurately represent the autistic profile that Simon delineates in The Science of Evil. For example, in a matrix in the latter part of the book, one finds that the profiles of psychopaths and autistics are not mirror images of each other; psychopaths show the same profile as in the blog post, but the autistic profile is negative for both cognitive and affective empathy (Table 1: Distinct Profiles of the Empathy Disorders, 154).

In fact, in contrast to his statement in his post that “people with autism are very capable of an empathic response,” The Science of Evil is relentless in its portrayal of the autistic capacity for affective empathy as highly impaired. In order to illustrate the nature of Asperger’s Syndrome, for example, Simon introduces a 52-year-old adult named Michael, whose dream “is to live in a world without people, where he can have total control.” Michael not only fails to read nonverbal signals, but “does not know how to respond to someone else’s feelings,” even when they are explicit (99).

The book does not differentiate between Michael not knowing what to do and not having an affective response at all.

The book does not explore the possibility that Michael may have long since shut down his emotional responses because of severe empathic and sensory overload, fear, anxiety, shunning, loneliness, bullying, despair, and other life experiences common to autistic people.

The book does not explore the possibility that Michael dreams of being alone because he seeks to comfort himself, in the midst of acute difficulties to which the world is largely oblivious, with a fantasy of control.

The book does not explore the possibility that Michael systemizes to an extreme degree in order to exert control over an extreme intensity of empathic and sensory experience.

And the book does not provide the story of Michael as only one example of the complexity of response among autistic people. It presents Michael as representative. Nowhere does Simon narrate any scenario in which any autistic person shows any affective empathic response to the feelings of another person. In fact, he does the following:

1. He asserts, without qualification of any kind, that for people with Asperger’s and people with classic autism, “Other people’s behavior is beyond comprehension, and empathy is impossible,” placing us all on the zero end of the empathy scale (117).

2. He then attempts to redeem autistic people as “Zero-Positive” (rather than “Zero-Negative,” which is reserved for psychopaths) because our “empathy difficulties” are associated with “having a brain that processes information in ways that can lead to talent” (citing the work of the savants Daniel Tammett, Derek Paravicini, and Peter Myers), and because “Zero-Positive” individuals are responsible for innovations in technology, science, mathematics, and other “systemizing” fields (96, 106-107, 122). Of course, he thereby leaves out the vast majority of autistic people who have no savant gifts and no special talent for innovation in any field at all. Hundreds of thousands of us therefore lose the already dubiously redemptive “Positive” label.

3. He goes to great lengths to insist that people with Asperger’s develop a moral code not because we are informed by an empathic response to others, but only out of a drive to systemize. When others act unethically, he writes, people with Asperger’s leap to the defense of the injured party — not because we are moved by empathy for the other person, but because unethical behavior “violates the moral system” we have “constructed through brute logic alone” (emphasis mine) (123). In other words, we’re simply upset that the rules have been broken.

Of course, this explanation rather begs the question of why anyone without an empathic response to the difficulties of other people would construct a moral code in the first place.

4. He characterizes people with classic autism as viewing their parents as “nothing more than a vending machine” to serve their desires. He thereby places people with classic autism outside the field of both empathic and ethical response, calling them “Morality-Negative” (119, 154).

And then he asserts in a post on the Autism Blogs Directory, four months after the publication of his book, that people with autism are, in fact, “very capable of an empathic response” — an assertion that appears nowhere, explicitly or implicitly, in the pages of The Science of Evil, published on two continents, and reviewed by critics the world over.

When someone writes a popular science book that will be read by far more people than any post on any blog, and in that book fails to address the depth and complexity of autistic experience, then we have a number of potential problems on our hands.

This is not about anyone hurting my feelings. It’s about the perpetuation of stereotypes and oversimplifications that, in my opinion, have the potential for tremendous harm. Consider the possibilities:

Autistic people describe our empathic experiences in detail, only to be told that we have such low empathy that we are the last to know it.

Autistic people protest abuse and ill-treatment, only to be told that we can’t understand other people’s motives and intentions, much less respond to them appropriately.

Autistic people are treated without empathy because other people believe that we have none ourselves.

Autistic people face lives of substandard care, isolation, and abuse because we are considered to have been born without a core component of humanity.

Autistic people lose opportunities for love, for friendship, and for caregiving work because people believe that we are incapable of them.

Autistic people lose our sense of who we are because we have to endure a constant and unrelenting barrage of messages that tell us that we are something else.

No, this is not about hurt feelings. It’s about the lives of people with classic autism. It’s about the lives of people with Asperger’s. It’s about the lives of people all along the spectrum. And it’s about the vulnerability, the rights, and the potential suffering of hundreds of thousands of living, breathing, fully human beings.

© 2011 by Rachel Cohen-Rottenberg

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The Empathy Issue Is a Human Rights Issue

Empathy. For most people, the word is synonymous with humanity.

The American Psychological Association calls empathy “the trait that makes us human.” 1 According to author D.H. Pink, empathy is “a universal language that connects us beyond country or culture. Empathy makes us human. Empathy brings joy…. Empathy is an essential part of living a life of meaning.” 2

In the popular mind, in scientific journals, and in autism-related books and websites, the canard that autistic people innately lack empathy (or have deeply impaired empathy) continues to hold sway. Of the innumerable reiterations of this trope, a few representative instances will have to suffice:

According to Vilayanur S. Ramachandran and Lindsay M. Oberman, “[T]he chief diagnostic signs of autism are social isolation, lack of eye contact, poor language capacity and absence of empathy…” 3

In his latest book, Simon Baron-Cohen writes that autistic people have “abnormalities in the empathy circuit in their brains” resulting in “zero degrees of empathy.” 4

And in a truly shameless display, physician Roy Q. Sanders, Medical Director of the Marcus Autism Center in Atlanta, GA suggests that “teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing — it is a waste of time and annoys the pig (at least most of the time).” 5

I could adduce an abundance of further examples, but these assaults on our humanity are almost too much to bear.

In late June of this year, I began publishing posts and links on the website Autism and Empathy: Dispelling Myths and Breaking Stereotypes. In order to find material, I’ve been searching online using the terms autism and empathy. The results are often excruciating, especially when they consist of choice words like the following:

“It’s as if they do not understand or are missing a core aspect of what it is to be human; to be and do like others and absorb their values,” says psychologist Bryna Siegel, director of the Autism Clinic, University of California, San Francisco. “Their worlds are more barren, their social world is very distorted, and they come out of their world not when you want them to, but when they want to.” 6

Such statements tend to flow rather freely in the autism world, and when I read them, I always find myself wondering why some professionals do not come out of their world and into the world in which we live.

Much formal research employs similarly dehumanizing imagery, albeit in rather colder, more clinical language — language that betrays a propensity to see the world in vitro rather than in vivo:

“Contrary to some previous accounts, both apes and some children with autism do appear to understand actions as goal directed if not fully intentional; that is, they
understand that others have goals, persist toward them, and perceptually monitor the process. This means that both of them show some skills of social learning, though not as powerful or pervasive as those of human 1- and 2-year-olds. However, neither apes nor children with autism follow the typical human developmental pathway of social engagement with other persons… In general, it seems that neither apes nor children with autism have — at least not to the same extent as typically developing human children — the motivation or capacity to share things psychologically with others.” 7

Placing apes and children with autism in the same category, in contradistinction to “human 1- and 2-year-olds,” generates nary a whisper of protest or the slightest expression of disgust from the research community — with the sterling exception of Morton Ann Gernsbacher, whose brilliant piece On Not Being Human speaks eloquently to the issue:

“Sixteenth-century theologians, Victorian anthropologists, and 20th-century Nazis are not the only ones who have deemed various groups of humans ape-like or nonhuman; some current-day American psychological scientists are just as guilty of this crime… [I]n a recent New York Times “notable book of the year,” an internationally acclaimed psychological scientist segregated autistic people from other humans and placed them ‘together with robots and chimpanzees.’” 8

Can you imagine the outcry from within the scientific community — and from the general public — if any researcher attempted to place African-Americans and apes in the same category?

Where is the outcry on our behalf?

I continue to wade through the debris, searching for the gems that describe us in the full light of our humanity. I find those gems in abundance, but the search is still a difficult undertaking. I sometimes feel as though I am facing down a never-ending procession of men and women, armed with prestigious titles and advanced degrees, all asking the same question: “Are autistic people truly human?”

After all, if empathy is synonymous with humanity, then spending millions of dollars and entire careers researching the question of whether autistic people have empathy is nothing more than a thinly veiled attempt to address the question of whether we are human at all.

In August, I was posting links to research when I felt an overwhelming sadness. Why should we need to adduce evidence to prove our humanity? I thought. Why is it simply not a given?

And so I must ask outright: Why is the question of our humanity the fodder for so much scientific endeavor? And why has the very act of posing that question not caused a storm of protest in defense of our human rights?

In a few weeks, I will return to graduate school to pursue a second master’s degree. For some time now, I’ve intended to make a critique of the research on autism and  empathy my area of study.

Truth be told, the prospect of spending three years reading about our allegedly deficient humanity fills me with apprehension. But in the service of the greater good, I am willing to address the issue. I am willing to engage in the tedious process of revealing the potential biases of the test instruments. I am willing to critique the conclusions drawn from studies — studies, I might add, that measure such things as how often autistic children anthropomorphize abstract objects moving across a computer screen, or whether autistic adults respond “appropriately” to a series of exaggerated facial expressions outside of any meaningful context. I am even prepared to argue the wisdom of attempting to measure the complex spiritual, emotional, psychological, and physical experience of empathy with recourse to questionnaires and brain scans.

But I am also beginning to rethink the entire project. After all, doesn’t approaching the issue from the standpoint of scientific critique give credence to the idea that science should engage the issue of our humanity as a subject of study?

I know that it’s difficult for non-autistic people to understand us. I know that, in general, it’s difficult to understand anyone across the divide of difference. But isn’t that the divide that empathy must bridge?

Where is the empathy that should restrain psychologists from creating dehumanizing caricatures and engaging in stark generalizations?

Where is the empathy that should engender humility about the things that science cannot touch?

Where is the empathy that should cause professionals and laypeople alike to respond with outrage against the dehumanization of autistic people, to protest the injustices done, and to cry out in the face of the devastating impact of these injustices on our hearts and on our minds?

In this day and age, if mainstream researchers engaged in studies purporting to prove that gay and lesbian people are incapable of love, that African-Americans lack intelligence, or that Jews are especially good with money, the outcry from both the scientific community and the general public would be loud and long. The prejudices that such research lays bare would be met with outrage.

I’m still waiting for our day.

© 2011 by Rachel Cohen-Rottenberg

Sources

1 Defining the trait that makes us human. APA Monitor, 28(11), 1, 15. Bailey, S. (1994)

2 Pink, D. H. A Whole New Mind: Why Right-Brainers Will Rule the World (2nd ed.). New York: Penguin Group, 2006.

3 Ramachandran, Vilayanur S. and Oberman, Lindsay M. Broken Mirrors: A Theory of Autism. Scientific American. October 16, 2006.

4 Baron-Cohen, Simon. The Science of Evil: On Empathy and the Origins of Cruelty. New York: Basic Books, 2011.

5 Sanders, Roy Q. Experts Reflect on Parenthood Finale. Accessed September 4, 2011.

6 Stars ‘CAN-do’ about defeating autism. April 10, 2002. Accessed September 4, 2011.

7 Tomasello, Michael; Carpenter, Malinda; Call, Josep; Behne, Tanya; Moll, Henrike. Understanding and sharing intentions: The origins of cultural cognition. Behavioral and Brain Sciences (2005) 28, 000–000.

8 Gernsbacher, Morton Ann. On Not Being Human. Association for Psychological Science (February 2007), Volume 20, No. 2. The “internationally acclaimed psychological scientist” is Steven Pinker, who wrote in The Blank Slate: The Modern Denial of Human Nature (New York: Viking, 2002), “Together with robots and chimpanzees, people with autism remind us that cultural learning is possible only because neurologically normal people have innate equipment to accomplish it.”

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