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Monday, September 19, 2011

Unwarranted Conclusions and the Potential for Harm: Rachel Cohen-Rottenberg's Reply to Simon Baron-Cohen

reprinted with permission

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 anyaffective 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

1 comment:

Unknown said...

Thank you - slam dunk!

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