Journeys with Autism

When I first began writing this critique, I tried to take the EQ test, and I found myself so stymied by it that I gave up. As a person who arrives at the “big picture” by putting together all the details, I find it maddening to be asked to respond to statements that are completely out of context. How I am to respond to a statement like “I don’t tend to find social situations confusing”? My mind visualizes a great number of social situations, and questions like the following arise:

What social situations?
How many people are there?
Are they all talking at once, or one at a time?
Do I know them?
Do I feel safe with them?
Do they know that I need extra time to respond?
Is there ambient noise?
Are people only engaging in small talk, or does the gathering have a focus?
Are there mostly autistic people or non-autistic people there?
How far did I need to travel to get to the gathering?
How tired am I?
How long does the gathering go on?
How much clutter is there in the room?
How many moving visuals are involved?
Will I have an opportunity to take breaks?
Will other people understand my need to take breaks?
If I get tired of talking, will people communicate with me using my text-to-text device?

It’s impossible for me to take all of the possible variations of a social situation implied by these questions and average them out in order to arrive at an answer. If you have a misunderstood disability like autism that makes you acutely sensitive to your environment, that requires you to work incredibly hard at things that other people take for granted, and that necessitates a great deal of time to rest and recharge, there are a huge number of variables that go into whether you end up feeling confused in a social situation. But the statements on the EQ test take none of that for granted; they come from the perspective of the able-bodied majority. There is no absolutely no perspective taking across neurological lines. None at all.

Moreover, the possible answers one can give to any of these questions are quite vague. For example, where does “Strongly agree” end and “Slightly agree” begin? To my mind, there is a long continuum between the two, and most of the varied social contexts that come to mind when I read each of the statements would require an answer all along that continuum. If, by some miracle, I could take all the varied social contexts in which I’ve found myself and average them out to arrive at something representative of my experiences, chances are that my response would end up somewhere on the continuum between “Strongly agree” and “Slightly agree” (or between “Strongly disagree” and “Slightly disagree”), and I’d have no way to provide the proper answer.

Of course, the EQ test was not put together with a view to the ways in which autistic people see, process, and experience the world, nor does it consider failures on the part of the non-autistic majority to understand our feelings, perspectives, and experiences to be failures of cognitive and emotional empathy. And so, compared to our non-autistic counterparts, we tend to score rather poorly on the test, with potentially devastating results in the real world.

For an idea of these results, let’s look again at Karla McLaren’s question to Professor Baron-Cohen, in which she delineates the difference between her impression of autistic people after reading work based on his theories, and the impression she came away with after meeting autistic people in person:

I have a question about the hypothesis that people on the Autism Spectrum lack empathy. went into a job supporting college-aged Spectrum students, and I read everything I could get my hands on — most of which follows your hypothesis about low empathy and incomplete or missing theory of mind. From all these books, I thought I knew the kind of people I’d meet, but I didn’t see a lack of empathy — rather, I saw people who were often overwhelmed by incoming stimuli and who had a very hard time organizing and understanding emotional cues. I’ve since worked with many Spectrum people, and I really think the theory is leading the data-gathering.

Is it possible that people on the autism spectrum actually have a normal range of capacity for empathy, but are often overwhelmed and unable to organize incoming emotional and social stimuli?

What I saw was that labeling Autism Spectrum people as unempathic obscures deeper inquiry. Sadly, that label also helps people treat Spectrum folks as aliens. The lack of understanding I saw “neurotypicals” show for Spectrum people made me ask: “Just who is the unempathic person here?”

Now, let us consider Professor Baron-Cohen’s response in the light of his own definitions of empathy. He begins by saying:

Certainly, the idea of portraying or treating people on the autistic spectrum as if they were aliens is abhorrent.

I’m certainly glad to hear that he feels this way, but of course, his response fails to take into account Karla’s suggestion that his own work has been at least partially responsible for this state of affairs. He says that treating autistics like aliens is abhorrent, and yet, he wrote in his 2001 paper Theory of mind in normal development and autism:

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)

Is it any wonder that people who read words like these treat us like aliens? And is simply saying that such treatment is abhorrent an appropriate emotional response to being told that your work may be causing others to dehumanize autistic people? It rather misses the point, I think.

He goes on:

I also think your point that people on the autistic spectrum are ‘overwhelmed by incoming stimuli’ is very important, since the implication is that under the right conditions, people with autism would show no empathy difficulties at all, if the incoming stimuli were not overwhelming. On this view, any empathy difficulties might be secondary to difficulties due to the rate of information processing.

No, professor, not might. Replace the word might with are, and we might be getting somewhere. Using might betrays a spectacular failure of perspective taking. After all, what have so many autistics, parents, occupational therapists, and specialists been saying, so many times, in so many ways, for so many years? And why does Professor Baron-Cohen not have the cognitive empathy to understand that yes, definitely, difficulties in the rate of information processing — along with other factors, internal and external, having nothing to do with empathy at all — account for why we have difficulties with conventional expressions of empathy in real time? Could it be that, like us, he has difficulty understanding experiences different from his own?

And why, oh why, does this line of thought appear in a Q&A session in Google+, and not in his latest book The Science of Evil (known in the UK as Zero Degrees of Empathy), in which he insists that autistic people are on the zero end of the empathy scale? Given that the quality of life for so many millions of people is potentially at stake, wouldn’t a book on the subject of empathy be an “appropriate” place to speak to the issue in a nuanced way?

The professor continues:

I have some sympathy for this view, because I have met many adults with Asperger Syndrome who can cope with one-to-one relationships and are very caring within these, and only find it difficult when they have to process information in fast-changing social groups. Equally, I have met many adults with Asperger Syndrome who can display their excellent empathy when they have the “luxury” of considering all the facts “off-line”, that is, when there is less time pressure creating demands to respond in real time.

Anyone else notice the sleight-of-hand here? Karla asked about people on the spectrum — not just people with Asperger’s. Personally, I don’t find it an appropriate emotional response to turn the conversation toward a subgroup of a subgroup, when the question was about all autistic people, and when Karla was expressing her concerns about the dehumanization of all autistic people.

As for his comment that people with Asperger’s Syndrome can “display their excellent empathy when they have the ‘luxury’ of considering all the facts ‘off-line,’” using the word “luxury” here, even in quotes, is highly prejudicial. It implies that we are asking for some sort of special treatment when we need the time and the space to understand the intensity of our experiences. It’s not a luxury to process the facts off-line; because of the rush of sensory and emotional stimuli, it is a physical necessity. For the professor to call it a “luxury” is like calling a wheelchair a luxury for someone who can’t walk. It derives from an inability to put himself in the shoes of autistic people and understand the ways in which we experience the world

Professor Baron-Cohen concludes his answer with the following:

These ideas also suggest new lines of research that the autism research community could follow up.

We’re suffering out here, every day, from the lack-of-empathy trope, and his response is that perhaps, someday, the researchers need to follow up? From where I sit, that response is not emotionally appropriate. It’s not even close.

After all, we’re not just research subjects. We’re not just fascinating objects of study. We’re human beings who suffer from assaults on our humanity.

Certainly, we deserve a more empathetic response.

© 2011 by Rachel Cohen-Rottenberg

In Part 1 of this series, I outlined the basics of the EQ test, introduced the definition of cognitive empathy assumed by the authors of the test, and critiqued the statements on the EQ test that speak to how well the respondent can read nonverbal cues. In Part 2, I talked about the problematic nature of the statements that measure perspective taking.

In this part, I will speak to the statements that measure emotional/affective empathy.

Definitions
Baron-Cohen and Wheelwright define emotional/affective empathy as “an observer’s emotional response to the affective state of another.” (Baron-Cohen and Wheelwright, 164) They go on to define three categories of empathy relevant to the EQ test:

• The feeling in the observer must match that of the person observed (e.g., you feel fright when you see someone else’s fear; Eisenberg & Miller, 1987; Hoffman, 1984).

• The feeling in the observer is simply appropriate to the other person’s emotional state in some other way, even though it doesn’t exactly match it (e.g., you may feel pity at someone else’s sadness; Stotland, 1969).

• The feeling in the observer must be one of concern or compassion to another’s distress (Batson, 1991).

All three categories foreground the appropriateness of the viewer’s emotional response; of course, the question of what constitutes an appropriate emotional response is an important one, to which I will return.

Statements that measure emotional empathy
On the EQ test, 13 statements deal solely with the appropriateness of emotional response while leaving aside the question of how the observer arrives at an understanding of the mental or emotional state of the other person:

6. I really enjoy caring for other people.
12. Friendships and relationships are just too difficult, so I tend not to bother with them.
18. When I was a child, I enjoyed cutting up worms to see what would happen.
28. If anyone asked me if I liked their haircut, I would reply truthfully, even if I didn’t like it.
32. Seeing people cry doesn’t really upset me.
34. I am very blunt, which some people take to be rudeness, even though this is unintentional.
37. When I talk to people, I tend to talk about their experiences rather than my own.
38. It upsets me to see an animal in pain.
39. I am able to make decisions without being influenced by people’s feelings.
42. I get upset if I see people suffering on news programmes.
43. Friends usually talk to me about their problems as they say that I am very understanding.
50. I usually stay emotionally detached when watching a film.
59. I tend to get emotionally involved with a friend’s problems.

As far as I can tell, the only statement in this list that shows a pure lack of empathy is number 18; cutting up a worm just to see what will happen (as opposed to, say, slaughtering a chicken in order to eat it) really can’t be explained away as anything other than unempathetic in the extreme.

But for me, all the rest are quite troubling, because they all assume “normal” situations that exclude, overwhelm, or evoke non-normative responses in autistic people. The situations falls into three categories:

• For reasons deriving from lack of empathy on the part of non-autistic people, or from difficulties in communication and information processing on the part of autistic people, the situation may be one that an autistic person cannot enter at all.

• The nature of the situation may trigger such an intense experience of emotional empathy that the autistic person needs to shut down.

• The response considered “appropriate” to the situation tends to work better for non-autistic people than for autistic people.

Contexts that may not be open to autistic people at all. Statements 6, 12, and 43 assume environments from which autistic people are often excluded.

Statement 6: When posed with a statement about whether the respondent enjoys caring for people, an autistic person’s response may very well be dictated by the fact that he or she may not have had many hands-on opportunities to do so. The settings in which these opportunities occur (hospitals, clinics, and the like) often present sensory and communication obstacles that other people are unwilling or unable to ameliorate. Moreover, autistic people are often kept away from such opportunities, precisely because of the stereotype that we lack empathy. An answer that derives from a lack of opportunity to care for people – an opportunity denied on the basis of the lack-of-empathy stereotype — will only reinforce that stereotype. After all, if you’re excluded from environments in which you can care for people, then you certainly can’t say that you enjoy doing so.

Statement 12: The feeling of wanting to give up on friendships and relationships can derive from a lifetime of bullying and exclusion, from having experienced a lack of empathy on the part of former partners and friends, or from auditory and communicative challenges that potential friends or partners are unwilling to deal with. It may have absolutely nothing to do with failures of empathy on the part of the autistic person.

Statement 43: Because of the auditory processing and communication challenges common to people with autism, many of us have difficulties with processing language and coming up with purposeful responses in real-time. These difficulties significantly lower the possibility that lots of people are going to come to us to talk about their problems. Most people want to talk face-to-face, rather than via text, a medium with which many of us feel more comfortable or use out of necessity.

Contexts in which autistic people shut down because of oversensitivity. Statements 32, 38, 39, 42, 50, and 59 all have to do with situations in which an autistic might need to shield because of an intensely felt experience. Seeing people cry, seeing an animal in pain, making decisions in the face of other people’s feelings, seeing people suffer on the news, watching a film with strong emotional content, and relating to a person with serious problems may be so painfully aversive that an autistic person might need to shut down.

We’re not talking here about a “normal” level of upset and difficulty. We’re talking about an acute experience of another person’s emotional state so intense that one has to detach in order to be of any use at all — to oneself or to anyone else.

An example: My daughter suffered a terrible betrayal this year at the hands of a friend whom she’d loved and trusted. Because she’s still in the process of healing, she still has moments of profound grief and pain. In those moments, I feel her grief and pain very intensely in my own mind and body, and I work very hard to keep them from levelling me. After all, my daughter needs me to be strong for her, not collapse in a sobbing heap on the floor.

I have seen some of the experts pathologize this level of sharing in the pain of another person, but the word “compassion” means “suffering with,” and that is exactly what I’ve done for as long as I can remember. Because I experience the emotions of others in this way, I try to choose carefully when and how to open myself up. I will always have an empathic response, often before I even consciously know what’s happening, but there are situations in which I will shut it down — sometimes instinctively, and sometimes consciously. For example, when I see a stranger crying at the grocery store, I might block my emotional response; it largely depends upon how long it’s been since I’ve entered into someone else’s strong emotional experience, whether or not I can physically remain in the auditory environment, and whether or not someone else in the situation is attending to the person. Certainly, if I allowed myself to respond in every single instance, there would be nothing left of me.

I’m not blocking the response because I lack empathy; to the contrary, I’m blocking it because my empathic experience is always so acute. If I have to shut down at times, it’s because I’m still learning how to take this gift and channel it properly in a world that has given me absolutely no guidance on how to do so — a world that, in fact, is oblivious to the fact that I even have this gift, or that sees it only in pathologizing terms.

Repression is a common response to overwhelming experience, and once a person enters into it, the defense mechanism becomes automatic and invisible. I’m old enough, and self-reflective enough, to understand the mechanism and to work around it. But there are an awful lot of people who have long since shut down their emotional responses as a defensive measure, who do not understand the process of repression, who have not yet been given the emotional language to put words to what is going on, and who have not yet encountered anyone who might be able to help them with the intensity of their experiences. Such people would very likely choose “Strongly disagree” in response to statements about whether they feel upset in the face of the pain of another being.

Contexts that engender responses considered inappropriate. Statements 28, 34, and 37 cover “inappropriate” responses to another person’s feelings. Two of them have to do with blunt honesty; the other has to do with whether a person talks about his or her own experiences, or listens to those of someone else.

As is true for most of the other statements on the EQ test, all of these statements assume a “normal” situation with “normal” people and “normal” expectations. And, of course, what “normal” people in “normal” situations experience and expect is not always what autistic people experience and expect.

For an autistic person talking to another autistic person, blunt honesty is usually the most appropriate response. In fact, I have autistic friends who absolutely insist on my being blunt. When they ask me a question, they want an honest answer. By the same token, when I ask my non-autistic husband a question, I honestly want to know what he thinks, largely because I don’t intuitively know how non-autistic people see me, and I very much want to find out.

In other words, I am almost always information gathering. I seldom, if ever, fish for compliments. So, for example, when I recently asked my husband whether he thought I was odd, I really wanted to know. And just as it’s very off-putting for a non-autistic person to hear the answer “Yes, I think you’re odd,” so it’s very off-putting for me when my husband ducks the question and keeps asking me why I’ve posed it in the first place.

It’s certainly important to learn the appropriate response for any given person; after all, most of us don’t want to go around hurting people’s feelings. So, when a non-autistic person asks me whether I like her haircut, I will generally respond in the affirmative, even if I don’t like it, in order to protect her feelings. Given my penchant for accuracy, I feel like I’m lying – which, of course, I am – but the falsehood would be considered an appropriate emotional response.

Of course, the test does not measure whether non-autistic people give an emotional response appropriate to an autistic person who asks the same sort of question. For many autistic people, honest responses are invaluable to our ability to navigate and to understand conventional social norms; when we don’t get honest responses, we can end up in situations in which we are shunned or bullied. So, for example, asking whether someone likes your haircut may be a way to find out whether your choice of style will open you to ridicule. Asking whether someone thinks you’re odd gives you some idea of what you might expect when you walk into a conventional social situation. When we ask honest questions, we often long for honest answers. Most people do not pick up that longing in any way, shape, or form.

In terms of talking about one’s own experiences in a conversation – I do that a lot. I don’t do it because I find my experiences utterly fascinating, or because I don’t care about other people’s experiences, or because I enjoy hearing myself talk. In fact, talking is usually very tiring for me. I do it mainly for the purpose of letting the other person know that he or she is not alone in the difficulty of the moment. In other words, I listen to the other person’s experience, and my sharing about my own life derives from an empathetic response.

Especially when speaking with an autistic person who has lived a lifetime thinking that no one in the entire world could possibly understand his or her experience, it’s very, very comforting for the other person when I share in these ways. So, if asked whether I tend to talk about my own experiences or listen to the other person’s experiences, I would answer, “Neither. I always try to provide space for both parties to tell their stories.” But of course, the test doesn’t provide me with an opportunity to give that answer.

Clearly, as is true for the rest of the EQ test, the statements measuring emotional empathy fail to consider life from the perspective of autistic experience, and so fail to measure the ways in which autistic people experience emotional empathy for others, and the ways in which non-autistic people fail to experience it on our behalf.

Next: In the Conclusion, I will share some thoughts about the general nature of the EQ test and its implications for autistic people.

© 2011 by Rachel Cohen-Rottenberg

In Part 1 of this series, I outlined the basics of the EQ test, introduced the definition of cognitive empathy assumed by the authors of the test, and critiqued the statements on the EQ that speak to how well the respondent can read nonverbal cues. In this post, I will talk about the problematic nature of the statements that measure perspective taking.

Statements that measure being able to see things from the perspective of another
Following are the 12 statements on the EQ test that primarily speak to perspective taking:

4. I find it difficult to explain to others things that I understand easily, when they don’t understand it first time.
11. It doesn’t bother me too much if I am late meeting a friend.
15. In a conversation, I tend to focus on my own thoughts rather than on what my listener might be thinking.
21. It is hard for me to see why some things upset people so much.
22. I find it easy to put myself in somebody else’s shoes.
25. I am good at predicting how someone will feel.
27. If I say something that someone else is offended by, I think that that’s their problem, not mine.
29. I can’t always see why someone should have felt offended by a remark.
36. Other people tell me I am good at understanding how they are feeling and what they are thinking.
48. Other people often say that I am insensitive, though I don’t always see why.
49. If I see a stranger in a group, I think that it is up to them to make an effort to join in.
60. I can usually appreciate the other person’s viewpoint, even if I don’t agree with it.

These statements measure the respondent’s ability to put himself or herself in someone else’s shoes. Statement 22 asks the question explicitly, but the idea that one can or should be able to walk in another person’s shoes underlies all the other statements in this category.

The difficulties of perspective-taking for both autistics and non-autistics
The ability to put oneself in another person’s shoes means being able to imagine the thoughts and feelings of the other person; to paraphrase Baron-Cohen and Wheelwright, it is rests on the ability to set aside one’s own perspective, to naturally imagine the sorts of responses a person might have to any given situation, and to make an intuitive judgment as to the content of the person’s mental state. In other words, being able to put oneself in another person’s shoes rests on having a proper ToM about the other person — to be able to reflect on the contents of another person’s mind, and to identify with the mental state of the other person as though it were one’s own.

This definition of ToM rests on the assumption that the people involved in an interaction experience the world in similar ways. After all, if you have never had a particular experience, you certainly don’t know what it feels like or how you would react; and if you experience emotion, cognition, and sensory stimuli in certain ways, you won’t be able to intuitively understand a person whose experience is wholly different. You might try to imagine what you would feel in a similar position, but all you would be doing is projecting yourself, from your own experience, into the experience of someone whose life and mode of perception are quite different.

Autistic people bear the brunt of this sort of projection all the time. For example, I have had people read my lack of eye contact as evidence that I am not listening to what they are saying, and that I am not interested in them. For non-autistic people, in non-autistic social situations, avoiding eye contact is, indeed, a sign of rudeness and lack of interest, rather than a physical necessity. And so, they assume that the reason I am not making eye contact is the same as the reason that they would not make eye contact.

In doing so, they are utterly failing to take my perspective. My reasons for avoiding eye contact are the polar opposite of theirs. For me, avoiding eye contact is, indeed, a physical necessity. I generally have to avoid eye contact in order to be able to process and understand what a person is saying. My auditory processing difficulties mean that I have to devote most of my energy to decoding and keeping up with speech, and I simply can’t afford to indulge myself in other forms of sensory processing; if I do, I will lose the meaning of what is being said. If I look in the person’s eyes, I am so distracted by the power of the soul that comes through them, by the emotion coming off the person’s face, and by the sheer intensity of my visual experience, that I cannot attend to the person’s words properly. So, when I am interested in what a person is saying, and when I feel moved to respond in an empathic way, I will look away from the person’s eyes and find something neutral and static to occupy my sight. My lack of eye contact is a sign that, in fact, the person has my undivided attention.

I have never once experienced having a non-autistic person intuitively take my perspective at these moments. I always have to explain my perspective with words.

On the whole, it’s very common for both non-autistic people and autistic people to believe, at some point, that everyone experiences the world in similar ways, and to assume that they therefore understand the perspective of another person. For example, I used to believe that everyone experienced sound as I do — loudly and with almost no filtering. I accounted for the fact that most people could converse in rooms with loud music — without getting irritable and exhausted — by telling myself that they simply had greater discipline, willpower, and maturity than I did. A false belief? Certainly. But such false beliefs also run in the opposite direction. In the same situations, no one understood that I experienced sound differently than they did. Based on that assumption, they were unable to see my perspective and respond to it appropriately. In fact, they often treated me as though I were being anti-social and not making a sufficient effort to enjoy myself.

Present research on autism and empathy is shot through with these failures in perspective taking. One such failure is the false belief that autistic people withdraw from social situations because we’re not interested in other people. Certainly, this may be true for some, but there are a number of other reasons that we withdraw — overstimulation, sensory overload, difficulty parsing spoken language in real-time, hyper-empathic awareness, exclusion, bullying, and so forth. And yet, non-autistic people often make the assumption that you enter a social situation because you’re interested in other people, and that you therefore withdraw from a social situation because you’re not. They then project that false belief onto us, and make the assumption that we withdraw from these situations for the same reasons they do. They’re unable to see life from the perspective of our experience of the world.

It’s also quite common for people to believe that a specific idea that is obvious to them is obvious to everyone else. For example, when I was teaching freshman English, I had to constantly remind some of my students to back up their opinions with supporting arguments. In response, they often said to me, “But it’s so obvious! Why do I have to explain it?” They had difficulty imagining that others could see the same issue in different terms. Frankly, I don’t see how autistic people could be total strangers to the idea that other people have perspectives different from our own; after all, the first time we are misunderstood, or told off, or bullied, or abused, or excluded, or dismissed, it becomes obvious that other people are coming from a wildly different place.

Biases in the perspective-taking statements of the EQ test
On the EQ test, what is the profile of the person whose perspective the respondent is asked to take? As in the section on nonverbal cues, it is assumed that the person observed is non-autistic and that the respondent should be able to take the perspective of the non-autistic person. A failure to do so contributes to a low empathy score. Of course, the test does not measure whether the respondent can take the perspective of an autistic person, nor does it assume that such a failure is a problem of empathy.

Take, for example, statement 36, “Other people tell me I am good at understanding how they are feeling and what they are thinking.” Who are these “other people”? They are, of course, the non-autistic majority. So, if you are in the non-autistic majority, it is far more likely that you are going to have other people tell you that you are good at understanding how they are feeling and thinking, because you share similar experiences and internal processes, and because there are simply more of you. On both counts, the odds that you are going to get it right increase significantly. And you will earn a higher empathy score as a result.

It is highly unusual for non-autistic people to tell autistic people that we are good at understanding how people are feeling and what they are thinking, which means that, regarding the statement at hand, an autistic person will earn a lower empathy score. Contrary to popular opinion, this state of affairs often does not derive from the failure of an autistic person to consider the perspective of someone else, but from projecting, as non-autistic people also do, from our own experiences. For example, I spent much of my life thinking that I understood how the majority experienced the world and trying to imagine all the different things that people might think, feel, and need. Based on my understanding, I went out of my way in my daily life to act with care and concern for other people, but was often told that I was getting it wrong — that they did not experience the situation as I did, and that they did not need what I thought they did. I was able to intuitively sense their emotions, but it grieved me that I was missing a sense of their perspective.

But now I understand. I was projecting how I operate, how I experience the world, and what I need onto people whose mode of processing is fundamentally different from mine, who experience the sensory and emotional worlds less acutely than I do, and who therefore have needs very different from my own. I tried to “do unto others as you would have them do unto you,” but it didn’t work — for the simple reason that, based on the ways in which I process information and experience my environment, what I need people to do for me is often the polar opposite of what they need me to do for them, under the very same conditions.

Before you suggest that I’ve just proven that autistic people lack empathy because we don’t intuitively understand the perspectives of “normal” people, let me point out two things:

a) Most “normal” people don’t intuitively understand the perspectives of autistic people, either. If they did, autism professionals wouldn’t need to run autism research projects, create EQ tests, speak at autism conferences, develop autism degree programs, or write books about autism, all in an effort to understand us and explain us to the non-autistic population.

b) Many autistic people work very hard to observe, to listen, to ask questions, and to understand the ways in which non-autistic people operate. Very few of us have consistently been the recipients of the same hard work from non-autistic people — which is the reason that, when I find a non-autistic person who wants to hear and understand my perspective, it’s a balm to my soul.

Underlying all the statements about perspective taking are a series of unequal assumptions. It is expected that “normal” folks should not be expected to easily understand autistic folks; this inability to intuitively “tune into” our perspectives, thoughts, and feelings is simply considered natural, and not evidence of an empathic failure. But the same rules do not apply to autistic people. It is expected that autistic folks should be able to easily understand “normal” folk. Our inability to intuitively “tune into” their perspectives, thoughts, and feelings is considered unnatural — evidence not simply of an empathic failure, but of a condition defined by empathic failure.

You’ll excuse me if this double standard does not sit well with me.

An example of the double standard is apparent in the following interchange between Karla McLaren and Professor Baron-Cohen that took place in a Q&A session sponsored by the Center for Building a Culture of Empathy and Compassion. Karla asked:

I have a question about the hypothesis that people on the Autism Spectrum lack empathy. I went into a job supporting college-aged Spectrum students, and I read everything I could get my hands on — most of which follows your hypothesis about low empathy and incomplete or missing theory of mind. From all these books, I thought I knew the kind of people I’d meet, but I didn’t see a lack of empathy — rather, I saw people who were often overwhelmed by incoming stimuli and who had a very hard time organizing and understanding emotional cues. I’ve since worked with many Spectrum people, and I really think the theory is leading the data-gathering.

Is it possible that people on the autism spectrum actually have a normal range of capacity for empathy, but are often overwhelmed and unable to organize incoming emotional and social stimuli ?

What I saw was that labeling Autism Spectrum people as unempathic obscures deeper inquiry. Sadly, that label also helps people treat Spectrum folks as aliens. The lack of understanding I saw “neurotypicals” show for Spectrum people made me ask: “Just who is the unempathic person here?”

Here, in part, is Professor Baron-Cohen’s response (I’ll be considering the rest of his response in Part 3):

You make an excellent point that empathy is a two-way street. So-called “neurotypicals” need to make an effort to understand what the world must be like for people on the autistic spectrum, and how to make people with autism spectrum conditions feel valued.

I find this statement to be quite interesting. There is absolutely no assumption that non-autistic people should be able to intuitively understand autistic folk. None at all. In order to come to an understanding about us, they “need to make an effort;” in fact, they are urged to do so. How exactly is making that effort any different from the ways in which autistic people must come to an understanding of non-autistics?

It’s not different in the least.

While Baron-Cohen acknowledges the need for greater emotional empathy and intellectual understanding on the part of the majority, he does not define the need of the majority to consciously and analytically understand our perspective — “what the world must be like for people on the autism spectrum” — as a failure of cognitive empathy. He simply assumes that it is natural that non-autistics would not naturally understand “what the world must be like” for us. The difficulty that “normal” people have in intuitively setting aside their own perspectives in favor of autistic perspectives, in intuitively understanding the sorts of responses an autistic person might have to any given situation, and in intuitively making a judgment as to the content of the autistic person’s mental state, is simply a given. After all, how could people possibly be expected to understand autism without the experts doing years of research and explaining it to them?

When autistic people lack the ability to intuitively understand what the world must be like for non-autistic people, it is a sign that we have a low-empathy condition. When non-autistic people lack this same ability regarding autistics, it is considered natural. It is on this double standard that the entire test rests.

Next: In Part 3, I will turn to the issue of emotional empathyl.

© 2011 by Rachel Cohen-Rottenberg

Introduction
The Empathy Quotient (EQ) test was designed by Simon Baron-Cohen and Sally Wheelwright, and is included in their 2004 paper The Empathy Quotient: An Investigation of Adults with Asperger’s Syndrome or High-Functioning Autism, and Normal Sex Differences. It is frequently used as one of the primary measures of empathy in autistic people, and is often brought forward to support the twin contentions that a) autistic people have below-average levels of empathy and that b) autism is, by definition, a low-empathy condition.

The test consists of a series of 60 statements, to which the respondent must answer one of the following:

• Definitely agree
• Slightly agree
• Slightly disagree
• Definitely disagree

The resulting test scores are interpreted in the following ways:

• 0 – 32 = low (most people with Asperger Syndrome or high-functioning autism score about 20)
• 33 – 52 = average (most women score about 47 and most men score about 42)
• 53 – 63 is above average
• 64 – 80 is very high
• 80 is maximum

As is standard for questionnaires and psychological tests, there are a number of “filler statements” that have nothing to do with the purpose of the test. On the EQ test, twenty filler statements are inserted, in the words of the authors, “to distract the participant from a relentless focus on empathy.” (Baron-Cohen and Wheelwright, 166)

I’ve gone through all 60 statements on the EQ test and attempted to categorize them under the following headings:

• Filler statements
• Statements regarding cognitive empathy
• Statements regarding emotional/affective empathy

As far as I can tell, statements 2, 3, 5, 7, 9, 13, 16, 17, 20, 23, 24, 30, 31, 33, 40, 45, 47, 51, 53, and 56 are the filler statements. I won’t be critiquing them, since they have no impact on the EQ score.

Regarding the other two categories, the authors are quick to point out that, when setting up the test, they attempted to make a distinction between statements designed to measure cognitive empathy and statements designed to measure emotional/affective empathy, but gave up on the effort because there is so much overlap. I am very cognizant of the complex nature of the overlap, but I’ve separated these statements out, mainly for the purpose organizing my critique. In the category of cognitive empathy, I have also separated the statements about reading nonverbal cues from the statements about perspective taking.

The critique consists of these components:

The Introduction provide a discussion of the basics of the EQ test.

Part 1 provides a definition of cognitive empathy, along with a critique of the statements on the EQ test concerning cognitive empathy and nonverbal cues.

Part 2 examines the statements on the EQ test that cover cognitive empathy and perspective taking.

Part 3 provides a definition of emotional/affective empathy and includes a consideration of the statements on the EQ test that speak to this form of empathy

The Conclusion brings together my thoughts about the general nature of the test and its implications for autistic people.

Part 1
Definitions
Of the 40 statements geared toward measuring empathy on the EQ test, the vast majority – 27 – have primarily to do with cognitive empathy. Of course, some of these statements encompass both cognitive and emotional components, but in them, a lack of cognitive empathy is an implicit explanation for the lack of a normative emotional response, so I have included them under the cognitive empathy heading.

In The Empathy Quotient, Baron-Cohen and 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).” According to the authors, cognitive empathy encompasses “setting aside one’s own current perspective, attributing a mental state (or ‘attitude’) to the other person (Leslie, 1987), and then inferring the likely content of their mental state, given the experience of that person.” (Baron-Cohen and Wheelwright, 164)

For those not familiar with the term “theory of mind (ToM),” Baron-Cohen defines it in the following way in his 2001 paper Theory of mind in normal development and autism:

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)

I’m including the preceding paragraph not only for purposes of definition, but also to illustrate a) Baron-Cohen’s assumption that autistic people lack a ToM, and b) to make clear the rather dire consequences of this conclusion for autistic people — that is, that we lack one of the essential qualities of full humanity. Because the definition of cognitive empathy in use on the EQ test is based on an equivalence with ToM, and because Baron-Cohen considers ToM a quintessential component of humanity, it’s vitally important to critique the sections of the EQ test that contribute to his conclusions about cognitive empathy and autism.

I want to point out that the definition of cognitive empathy being used in Baron-Cohen and Wheelwright’s paper is quite different from the one that I have been using for some time. In my understanding, cognitive empathy has to do with being able to read nonverbal cues (body language, facial expressions, the expressions in the eyes, and so on) in order to intuitively “tune in” to what another person is thinking or feeling. I have not been using it simply to cover being able to see things from another person’s perspective or to understand the other person’s mental state.

To me, these are two separate, albeit related, processes. I have difficulty reading the nonverbal cues of non-autistic people, but I can’t remember a time in my life that I didn’t ask numerous questions or make numerous observations in order to understand the perspectives of other people; and I certainly can’t recall ever making the assumption other people’s thoughts and feelings were exactly like my own in every instance. In fact, my perception that my family members had values, and perspectives, and thoughts, and feelings that were altogether different from my own engendered a deep sense of aloneness in me from the time I was very young. Feeling like a stranger in a strange land is common for autistic people; the sense of being an anthropologist from Mars is a reflection of the fact that we are often keenly aware that other people perceive the world in ways vastly different from our own, and that we seek to make sense of it.

Given that I consider the reading of nonverbal cues and the ability to understand the perspective of others two separate processes, I will speak to the statements concerning them separately.

Statements that measure being able to read nonverbal cues
Here are the 15 statements on the EQ test that measure the respondent’s ability to pick up nonverbal cues:

1. I can easily tell if someone else wants to enter a conversation.
8. I find it hard to know what to do in a social situation.
10. People often tell me that I went too far in driving my point home in a discussion.
14. I often find it difficult to judge if something is rude or polite.
19. I can pick up quickly if someone says one thing but means another.
26. I am quick to spot when someone in a group is feeling awkward or uncomfortable.
35. I don’t tend to find social situations confusing.
41. I can easily tell if someone else is interested or bored with what I am saying.
44. I can sense if I am intruding, even if the other person doesn’t tell me.
46. People sometimes tell me that I have gone too far with teasing.
52. I can tune in to how someone else feels rapidly and intuitively.
54. I can easily work out what another person might want to talk about.
55. I can tell if someone is masking their true emotion.
57. I don’t consciously work out the rules of social situations.
58. I am good at predicting what someone will do.

I’ll begin by pointing out the inherent biases of these statements. They were clearly written by non-autistic people, with the assumption that the person being observed by the respondent is non-autistic, and that the social settings to which they refer are composed mainly of non-autistic people. (For example, the statement “I find it hard to know what to do in a social situation,” assumes a conventional social situation in which most, if not all, of the other people are non-autistic.) In other words, the statements are created by “normal” people, to measure responses to “normal” people, in “normal” settings.

When it comes to measuring empathy, this bias is a significantly troubling one — not just for autistic people, but for disabled people in general. The statements do not come from the perspective of autistic/disabled experience, they do not measure the respondent’s ability to read the nonverbal expression of autistic/disabled people, they do not consider the social position of autistic/disabled people in conventional social settings, and they do not consider any settings in which autistic/disabled people are the majority members.

To understand the implications of this bias, consider the first statement: “I can easily tell if someone else wants to enter a conversation.” As an autistic person, when I am in a “normal” social situation, I have great difficulty knowing when to jump into a conversation, and I am mystified by the fact that others seem to be reading one another’s signals and knowing when to let one another in. (In settings with autistic people, I do not have similar difficulties, as I understand both the cues and the social norms much better.) So, I would likely answer “Strongly disagree” to the first statement, simply because most situations in which I find myself involve “normal” people, who put out cues I do not understand; my answer, based solely on my minority status, would contribute to a lower empathy score. (I could skew the results by imagining myself only in situations with autistic people, but since the test is clearly measuring what happens in normative situations, I would respond to the statement based on the totality of my experience.)

Because the people writing the test are non-autistic, they have no idea of the methods that I use to work around the problem of being unable to read “normal” social cues. In instances in which I cannot intuitively tell when someone wants to enter a conversation, I tend to consciously look for people who aren’t able to get a word in edgewise, and I attempt to make room for them. In terms of perspective taking, this approach shows a significant level of cognitive empathy: I observe process, I see who is being excluded, and I identify with the experience of exclusion to such a degree that I attempt to ease the discomfort of other people. The fact that the authors of the test do not understand my adaptive mechanisms is quite problematic, because while my inability to tell when “normal” people want to enter a conversation would contribute to a low score, my adaptive mechanisms reflect a high level of cognitive empathy that the test does not pick up.

The statement about knowing when to include others in a conversation also fails to address the issue of what happens to autistic or otherwise disabled people in “normal” social settings. Given the social roles in which disabled people tend to be cast, this omission is a serious one. Disabled people often find ourselves wanting to enter a conversation in a social setting, only to have other people exclude us completely. I have been in a number of situations in which I’ve had this experience. “Normal” people were unable to read my nonverbal signals sufficiently to bring me in; in fact, they rendered me socially invisible. I always hesitate to talk in universals, but this experience is about as close to a universal one as you can find for disabled people, and anyone familiar with both the experience and the sociology of disability easily understands it.

I’m certain that if you asked most “normal” people whether they chronically fail to notice when disabled people want to enter a conversation, they’d deny it. For the most part, they pay so little attention to us that they probably don’t even realize what they’re doing. But these are the very same people who would very likely answer “Strongly agree” in response to the statement that they can easily tell if a person wants to enter a conversation. And the only reason that, according to the test, such a response is valid is because, in most instances, such people actually do notice other people sufficiently to read their signals. Thus, all the response indicates is that people in the majority are attentive to other people in the majority. It does not address a bias against disabled people, in the same setting, that is based on anything but empathy.

Finally, all of the statements that cover one’s ability to decipher the nonverbal cues of “normal” people rest on the assumption that everyone should be able to intuitively do so, and that an inability to do so is evidence of a lack of empathy. For example, the statement “I am quick to spot when someone in a group is feeling awkward or uncomfortable,” assumes that the respondent is looking at a non-autistic person. In this instance, I can certainly see how it might be difficult for an autistic person to quickly spot whether a non-autistic feels awkward or uncomfortable, because of difficulties in reading the person’s cues. I can also see how it might be easy for a non-autistic person to quickly spot whether another non-autistic person feels awkward or uncomfortable, because of an understanding of those same cues.

But of course, the test does not assume that the person being observed is autistic, that everyone should intuitively be able to read the nonverbal cues of the autistic person, and that an inability to do so is evidence of a lack of empathy. After all, if the statement about intuitively reading awkwardness or discomfort assumed that the respondent were looking at an autistic person, the results would come out quite differently, for two reasons: a) autistic people stand a better chance of reading one another’s signals properly, and b) non-autistic people usually find it very difficult to read autistic people’s signals properly.

For example, when I am in a store in which very loud music is playing, I have never had the experience of a non-autistic person being able to read my discomfort or note my awkwardness. Not once. Not ever. And yet, for me (and for a great many other autistic people), being in a store with very loud music is the hell-realm, and the question of whether to stay or go, whether to ask the store manager to turn down the music or not, whether to cry with frustration or put my fingers in my ears, places me in an extremely awkward position. My experience surpasses “normal” social awkwardness and “normal” social discomfort by several orders of magnitude, and yet non-autistic people fail to intuitively recognize that I’m having any kind of aversive experience at all. In every such situation I enter, I have to explain my experience, in detail, if I am to stand a chance of someone responding appropriately.

In general, when it comes to their relationships with autistic people, most non-autistics cannot, in the language of statement 52, “tune in to how someone else feels rapidly and intuitively.” And yet, of course, no one considers neurotypicality to be, by definition, a low-empathy condition.

Next: In Part 2, I will turn to the issue of perspective taking.

© 2011 by Rachel Cohen-Rottenberg