Monday, July 25, 2011

An interview with Rachel Cohen-Rottenberg of Autism and Empathy

An interview with Rachel Cohen-Rottenberg of Autism and Empathy.

Where does you interest in the subject of autism and empathy come from?

For a long time, I've been very troubled by the stereotype that autistic individuals lack empathy, and by the lack of specificity that people bring to the discussion. There are three kinds of empathy -- cognitive, emotional, and expressed -- and yet it's unusual to find people taking care with which one they're talking about. Much of the time, one hears generalized statements along the lines of "autistic people lack empathy" or "autistic people have impaired empathy," and most people interpret those statements to mean that we lack the ability to feel with and for other people. In my experience, and in the experience of many others in the autism community, that is very decidedly not the case.

What made you decide to create a separate blog on autism and empathy rather than just continue to discuss it on your own blog? Is this in part a response to Simon Baron-Cohen's latest book, The Science of Evil?

While I've had an interest in the subject for a long time, Simon Baron-Cohen's latest book was the catalyst for my decision to create the site. Both the book and the interviews he's done about it trouble me a great deal. While he himself acknowledges that it is very difficult to measure emotional empathy, he continues to assert that autistic people have an impairment in this area. I'm also very concerned that he considers autistic people to have zero degrees of empathy -- and that he includes that assertion in a book about various forms of psychopathy, which he characterizes as deriving from zero degrees of empathy as well.

I should point out, in fairness, that Dr. Baron-Cohen considers autistic people to have "zero-positive" empathy while psychopaths have "zero-negative" empathy, but his assertion that we are on the zero end of the scale fails to account for the fact that many autistic people, autism parents, and autism professionals report normal-to-high levels of emotional empathy, and that there is no test that can reliably measure emotional empathy at all. And for most people, the idea that we are "zero-positive" isn't going to be particularly comforting or result in greater acceptance; all it really says is that we lack empathy but do not mean harm. I work as a caregiver, and I can tell you for certain that my employers would not hire someone they believed would do harm and not intend it! They want someone with empathy, sensitivity, and responsiveness, and fortunately, they are able to see that I have all of those things. But for many people, the stereotypes loom very large.

In order to counter the prevailing mythology, I decided to start the Autism and Empathy website. It exists as a place to gather together two types of information: 1) the stories and experiences of autistics, autism parents and family members, autism professionals, and anyone else with an interest in the subject and 2) critiques of current autism theory, along with research that counters the stereotypes. The Autism and Empathy site allows people to come together and read about the subject in one place.

What bothers you the most about the research involving autism and empathy? Do you think the wrong kinds of questions are being asked?

My main difficulty with the research on autism and empathy is that it so often fails to take into consideration the nature of autistic experience. It tends to see autistic people only through the eyes of the non-autistic observer, and then interprets the results as they might be interpreted if a non-autistic person were manifesting the same responses. So, for example, if you have a child who laughs hysterically when someone is hurt, a non-autistic observer will likely draw the conclusion that the child has no empathy; after all, the observer thinks, why else would the child laugh in response to another person's pain? But if you look at the situation through the eyes of the autistic child, who has an acute experience of the sensory and emotional world, who is flooded with sound, with visuals, and with the intense emotion of the situation, and who does not have the language to describe his or her experience, then the hysterical laughter signals something very different. It is a physical response to being overwhelmed and a sign that the child is in distress. In fact, it may signal a very high level of empathy on the part of the autistic child, who may be having immense difficulty shielding from the experience of the person in pain.

Certainly, for the sake of a child's ability to navigate the world and relate to a variety of people, it makes sense to work on more appropriate responses; but for some autistic people, who have great difficulties with communication, conventional expressions of empathy aren't possible. The lack of conventional expression is not the same as a lack of emotional empathy; but, all too often, the research makes that huge, unwarranted interpretive link.

There is also the difficulty of judging cognitive empathy only from a non-autistic point of view. It's clear to me that people with similar minds and similar experiences have an easier time understanding one another's cues and guessing at one another's feelings. And, because there are more non-autistic people than autistic people, the average person is able to guess correctly more of the time. On the whole, autistics do have difficulty interpreting the nonverbal cues of non-autistic people; however, many of us do quite well at interpreting what's going on in the experience of another autistic person. When a non-autistic person generalizes that autistic people have impaired emotional empathy, he or she is showing equal difficulty in reading the nonverbal cues of autistic people and understanding our states of mind.

To me, the difficulty of reading people who are very different from oneself and imagining how they might feel is not a problem of impaired empathy. It's a problem of reaching across the divide of vastly different experience, which is a challenge for all human beings.

Do you think that a subset of individuals with autism might truly lack all forms of empathy, that the spectrum is wide and encompasses all ranges of empathy levels or do you see those individuals with autism who apparently lack empathy as being misunderstood?

Of course, there are autistic people who lack empathy, just as there are non-autistic people who lack empathy. We're human beings, after all. But I don't think that these differences in the autistic population have anything to do with where the autistic person is on the spectrum; some parents of kids on the moderate-to-severe end of the spectrum have reported seeing empathy in their children, and nonverbal autistic people who can write describe their experiences of empathy quite well.

Do you see a difference between the autism community itself and how it views autism/empathy and the larger world and how it views autism/empathy?

Very much so. The myth that autistic people are cold, emotionless robots who cannot understand or care about the feelings of others is alive and well in the larger world. Inside the autism community, though, one of the few things that most of us agree on is that this stereotype is highly inaccurate. So often, I read words from parents like the following: "When we first got the diagnosis, I was afraid that my child would never feel empathy, never care about the feelings of other people, never love me. And as we progressed on our journey, and I saw that my child feels the emotions of other people acutely, and shows care and concern, that was my first preconception to fall by the wayside."

Who do you hope will read your blog? Who do you hope will contribute to it?

At this point, my goal is for parents, family members, and autistics to come to the site and see that their experiences are not an anomaly. So far, I have obtained permission to post numerous pieces by autistics, parents, and professionals, and I've only just begun the process of collecting all the information that's out there. The site also contains links to research about autism and empathy, and to critiques of the current literature.

Ultimately, of course, I want people outside of the autism community to come to the site and see a wealth of information that dispels all the stereotypes they've heard.

What do you hope will be the end result of a blog on autism and empathy?

I hope that the larger world will come to see autistic people as full human beings, with the full range of human feelings, and that we can turn away from the stereotypes toward greater understanding.


Anonymous said...

I commend Rachel for helping to dispel the myths of autism. It is important that the world understand as more children on the spectrum reach adulthood and work to make their way in our society. Acceptance and understanding is crucial.

Ben Stansfield said...

"And, because there are more non-autistic people than autistic people, the average person is able to guess correctly more of the time."

Thank you for putting this so succinctly.
I've been hammering away at this nugget for a while, talking with friends and family about it. I don't think any/many of them are convinced yet, but frankly, they're not the ones I'm worried about.
What so many are calling empathy, as if empathy were a superpower, are just better guesses than mine :-)
I've said it before, and here it is again: not even non-autistic people can feel another person's feelings, no matter how deeply something is felt. Nobody can actually see inside anothers' mind. Words are only one of the ways in which human beings communicate those feelings. I'm okay with words, actually, but I have trouble with my guessing. I'd rather someone just tell me what's going on inside their head, but that usually elicits disappointment that I had to ask, that I didn't just KNOW. One of the things I want to ask, when faced with their disappointment is, are you sure you really don't like being asked? are you so sure that I don't care about your feelings, that you don't realize that asking how someone is feeling can be caring? when coming from someone as direct as myself, it's a big deal.
and thanks Kim, for having Rachel here.



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