And then, I read a 2004 article by Uta Frith, and I moved away from my stance of critical detachment toward one of absolute moral outrage.

There I was, enjoying a quiet day at home, reading by the woodstove, minding my own business, and wanting nothing more than to have an enjoyably uneventful time, when I stumbled upon the following piece of remarkably nuanced thinking and stellar prose in Frith’s Emanuel Miller lecture: Confusions and controversies about Asperger syndrome:

“One way to describe the social impairment in Asperger syndrome is as an extreme form of egocentrism with the resulting lack of consideration for others.” (Frith 676)

Don’t you just love when these kinds of prejudicial statements rise up and punch you in the gut? I know I do. It’s just so much fun to read about myself in these terms. You have no idea. And what makes it all the more fun is that the irony of the statement is entirely lost on the writer. She engages in a prejudicial generalization about an entire group of people (otherwise known as a stereotype) and, in the same breath, tells us that we’re the ones with a “lack of consideration for others.”

And here I thought it was autistic people who couldn’t understand irony.

Now, you might not think it could get worse, but that’s because you haven’t read a lot of papers on autism and theory of mind. As it turns out, not only are we egocentric, but we’re unlike those “normal selfish” people who can use egocentrism to their advantage. At least, with them, someone gets something out of it, right? But with us — well, we just can’t help ourselves:

“The self-absorption and disregard of others is not like the strategy that a normal selfish person might deliberately adopt and flexibly use according to what is currently in his or her best interest. Autistic egocentrism, by contrast, appears to be non-deliberate and not determined by what might currently be in the best interest of the individual.” (Frith 676)

In other words, nature has made us selfish. We were just born that way. It’s taken us over and it’s out of our control.

And guess what happens once you peg a whole group of people as being egocentric and selfish? Everything becomes our fault. All the problems in our personal relationships? All our fault! All the problems in our social world? All our fault! You don’t believe me? Read on, my brothers and sisters:

“This egocentrism seems to present a huge difficulty in forming successful long-term interpersonal relationships. Spouses and family members can experience bitter frustration and distress. They are baffled by the fact that there is no mutual sharing of feelings, even when the Asperger individual in question is highly articulate.” (Frith 676)

Yes, you heard it here. We cause people “bitter frustration and distress.” Of course, they do not cause us “bitter frustration and distress.” No. Never. Just doesn’t happen. If we feel “bitter frustration and distress,” it’s all our damned fault for being so, you know, abnormal. If we were only normal, we wouldn’t feel frustrated and distressed. Problem solved!

And, of course, it’s absolutely UNHEARD OF to find a neurotypical person who has difficulty expressing his or her feelings. It just doesn’t happen. Those men I dated and broke up with because I couldn’t get them to articulate a feeling to save their lives? I must have misunderstood where they were coming from. When they were telling me I was hormonal — or refusing to speak altogether — I guess their body language was actually saying, “Yes, honey, I understand and am awash in feeling.”

But of course, I wouldn’t know anything about that, because apparently, I’m just not able to imagine what other people might be thinking. Or so says the author:

“One obstacle seems to be an inability on the part of the person with Asperger
syndrome to put themselves into another person’s shoes and to imagine what their own actions look like and feel like from another person’s point of view.
Another way to describe the social impairment is as a failure of empathy, involving a poor ability to be in tune with the feelings of other people.” (Frith 676)

I’ve just spent the weekend going through dozens and dozens of articles, and these kinds of statements keep coming up, over and over and over. I can only conclude that the researchers are perseverating on a theme. And I don’t mean for a day, or a week, or a month, but for years and years and years. It’s incredible. You’d think they’d be more flexible and want some change — a broadening of perspective, so to speak — instead of this incessant sameness.

But you know what happens when you try to separate a person from his or her perseverations? It’s not a happy moment. Witness then, the way that the author responds to the fact that autistic people have been writing self-reflective narratives for some time. In a section whose title, “Listening to people with Asperger syndrome,” should really have been “Dismissing people with Asperger syndrome” (or did I miss the intentional irony?), the author makes the following assertions regarding people with Asperger’s who see themselves as having a different experience of the world and a unique perspective on life, rather than being a collection of deficits:

“Researchers and clinicians can agree with this to some extent. However, they may point out that a peculiar lack of insight and an egocentric viewpoint are typical of the syndrome, throwing doubt on at least some of the self-assessments of needs and expectations.” (Frith 681)

In other words, the “experts” have determined that we lack insight and suffer from egocentricism, so whatever we say about our own desires, our own needs, our own experiences, and our own expectations of other people is suspect. Got that? If that’s not a perfect formula for disempowering hundreds of thousands of autistic people, I don’t know what is. And it very neatly closes off the potential for measuring the external validity of the research findings, too.

But, of course, those of us who reflect upon ourselves and others in insightful ways probably don’t have Asperger’s anyway:

“One problem with the autobiographical literature is that the authenticity of the diagnosis is not guaranteed” (Frith 681-682).

Will people ever get tired of the perseverative need to keep saying this? Would it be possible for them to just walk in our shoes and say, “Oh, I see. Now I understand. Thank you for providing a reality check on my lab tests”? Would that really be so terribly difficult?

But the zeal to save a theory from the clutches of reality does not simply extend to talking about our inherent egocentricism and casting doubt on our diagnoses. Oh no. It moves into misinterpretations so extreme that they beggar belief. Take, for example, the following:

“The autobiographies of individuals with Asperger syndrome indicate a high degree of retrospective self-analysis that came with adulthood. This can be seen, for
instance, in Gunilla Gerland’s autobiography (1997) and in Clare Sainsbury’s collection of over twenty individuals’ reminiscences of their school years (2000). These works suggest that self-knowledge and sharing of knowledge with others was poor in childhood.” (Frith 683)

So, let’s get this straight: Because we now look back on our childhoods and understand things that weren’t clear before, that in itself is evidence that we lacked self-knowledge and understanding of others as children. Of course, the questions that jump immediately to mind are the following: What self-reflective adult doesn’t look back on childhood and understand things that were opaque before? And what small child understands things the same way as an adult? When non-autistic people look back, reinterpret, and reweave the stories of their lives in narrative form, we laud them for being mature, creative, and insightful. But when autistic people look back, reinterpret, and reweave the stories of our lives in narrative form, we’re told it’s evidence that we lacked theory of mind in childhood.

Not too much confirmation bias there.

But the theory must be saved. Oh, yes. And its subjects must be dismissed.

Source

Frith, Uta. “Emanuel Miller lecture: Confusions and controversies about Asperger syndrome.” Journal of Child Psychology and Psychiatry 45, no. 4 (May 2004): 672-686. doi: 10.1111/j.1469-7610.2004.00262.x.

© 2012 by Rachel Cohen-Rottenberg

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 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

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

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

Baron-Cohen begins his paper with an introduction characteristic of many articles about autism and autistic people:

“Autism is widely regarded to be the most severe of the childhood psychiatric conditions (Rutter, 1983; Frith, 1989; Baron-Cohen, 1995). It is diagnosed on the basis of abnormal social development, abnormal communicative development, and the presence of narrow, restricted interests, and repetitive activity, along with limited imaginative ability (DSMIV, 1994). Such children fail to become social, instead remaining on the periphery of any social group, and becoming absorbed in repetitive interests and activities, such as collecting unusual objects or facts. It is a tragedy for their families who work tirelessly to attempt to engage with and socialize their child, mostly with very limited results.” (Baron-Cohen, 3)

Let’s consider the professor’s assumptions and omissions:

1) Baron-Cohen characterizes autism as “the most severe of the childhood psychiatric conditions.” However, autism is not a psychiatric condition, nor is it limited to children. It is a neurological condition with which we are born, and with which we live throughout our lives.

2) The professor describes autism mainly by pointing to external markers: social development, communicative development, and the presence of restricted interests and repetitive activity. The only mention of our internal processes is the remark that we have “limited imaginative ability,” which is not even the case in all instances. Take a look at the work of autistic artists all over the world and you will see a level of imagination that eludes most people, including professors at major universities.

However, the author’s omissions are even more telling than his words. Nowhere does he mention our sensory sensitivities, our unusual communicative or cognitive abilities, our capacity for rational thought, our empathy, our gifts, the love we feel for others, or any other process that goes on in the human mind and heart. To see autistic people only by external markers shows a significant lack of empathy in every sense of the word.

3) Autism is “a tragedy for…families who work tirelessly to attempt to engage with and socialize their child, mostly with very limited results.” Our very existence, apparently, is a tragedy. Autistic people, of course, have no feelings, no struggles, and no tragedies of our own. We just cause other people pain and suffering.

Once he gets done slandering us, Simon-Cohen adduces a number of questionable arguments for his extreme-male-brain theory—arguments with which he seeks to prove that autistic people have odd versions of male brains:

“(i) Normal males are superior in spatial tasks compared to normal females, and people with autism or Asperger Syndrome are even better on spatial tasks, such as the Embedded Figures Test (Jolliffe and Baron-Cohen, in press).” (Baron-Cohen, 33)

Any difference in abilities between males and females can easily be explained not by brain structure, but by the ways in which girls are socialized and educated in western societies. The conclusion that neuro-typical males are innately superior to neuro-typical females in spatial tasks ignores the effects of culture, context, and socially imposed gender roles.

Moreover, many autistic people have very poor spatial abilities. I am autistic, but my spatial abilities are quite limited. I failed Calculus because I couldn’t rotate three-dimensional objects in my mind. I still can’t. My mind works only in two dimensions. I can see height and width, but not depth.

“(ii) There is a strong male bias in the sex ratio of autism or AS.” (Baron-Cohen, 33)

As Tony Attwood and others have shown, female Aspies tend to have an entirely different presentation from males. The diagnostic criteria were developed from the results of studies using only males. All of Leo Kanner’s subjects and Hans Asperger’s subjects were boys. The male bias lies in the diagnostic markers, not in the condition of autism itself.

“(iii) Normal males are slower to develop language than normal females, and children with autism are even more delayed in language development (Rutter, 1978).” (Baron-Cohen, 33)

People with Asperger’s, by definition, do not have language delays. Given that Asperger’s Syndrome is autism by a different name, and that more than half of all autistic people have Asperger’s, it’s impossible to make the claim that the language development of all autistic people is delayed.

“(iv) Normal males are slower to develop socially than normal females, and people with autism are even more delayed in social development (O’Riordan, Baron-Cohen, Jones, Stone, and Plaisted, 1996).”

Baron-Cohen fails to question the reason for the lag in normative male social development. Is it nature or nurture? Since girls are socialized to cooperate, and boys are socialized to fight, it’s clear that nurture plays a large role in helping girls develop better social skills than their male counterparts.

“(v) Normal females are superior to males on mindreading tasks, and people with autism or AS are severely impaired in mindreading (see Baron-Cohen et al, 1996).”

It’s true that most people with autism cannot figure out the mental states of other people from nonverbal cues. It’s also true that Baron-Cohen, despite his obsession with the external behaviors of autistic people, is unable to figure out our mental states at all. Does that make him autistic? After all, he’s a man and he can’t read our minds.

I rest my case.

“(vi) Parents of children with autism or AS (who can be assumed to share the genotype of their child) also show superior spatial abilities and relative deficits in mindreading (i.e., a marked male brain pattern (Baron-Cohen and Hammer, in press b).”

If the female, non-autistic parent has superior spatial skills, doesn’t that disprove that such skills are inherently male?

“(vii) Normal males have a smaller corpus callosum than normal females, and people with autism or AS have an even smaller one (Egaas, Courchesne, and Saitou, 1994).”

A 1997 study by Professors Bishop and Wahlsten at the University of Alberta showed that, on average, the corpus callosum is larger in males, not smaller. According to the article, “Data collected before 1910 from cadavers indicate that, on average, males have larger brains than females and that the average size of their corpus callosum is larger…The recent studies, most of which used magnetic resonance imaging (MRI), confirm the earlier findings of larger average brain size and overall corpus callosum size for males. The widespread belief that women have a larger splenium than men and consequently think differently is untenable.”

“(viii) Left handedness is more common among males, and people with autism or AS show an elevated incidence of left-handedness. Fein, Humes, Kaplan, Lucci, and Waterhouse (1984) found an 18% incidence of left-handedness in autism. Satz and colleagues (Satz, Soper, Orsini, Henry, and Zvi, 1985; Soper, Orsini, Henry, Zvi, and Schulman, 1986) found a very similar picture: in their autistic sample, 22% were left handed.”

I didn’t find any of the previous criteria compelling in the least, but now that we’re talking about left-handedness, I really have to give the professor his due.

Yes, my friends, I am left-handed and autistic.

Of course, my mother, who was also left handed, was not autistic. My father, who was not left-handed, was almost definitely autistic. And my mother’s parents, both of whom were left-handed, were neuro-typical. But why throw in such annoying details when the proof is sitting right in my left hand?

“(ix) In the normal population, the male brain is heavier than the female brain, and people with autism have even heavier brains than normal males (Bailey et al, 1994).”

Apparently, to Professor Baron-Cohen, size matters.

“(x) In the normal population, more males are found in mathematical/mechanical/spatial occupations than females. Parents of children with autism or AS are disproportionately represented in such occupations (Baron-Cohen, Wheelwright, Bolton, Stott & Goodyer 1996). These occupations all require good folk physics whilst not necessarily requiring equally developed folk psychological skills.”

Like his first conclusion, his final one ignores the effects of culture and context. Girls are socialized and educated to follow paths that do not involve mathematical, mechanical, or spatial skills. No proof exists that females, by nature, find it difficult to acquire these skills. None.

In addition to the faulty evidence that Baron-Cohen adduces, there are three general problems with his theory:

1) He employs a dichotomy between the empathizing female brain and the systematizing male brain. Apparently, he has never considered the idea that systematizing and empathizing could exist in extreme measure in the same brain. His theory leaves out those of us who both systematize and empathize in non-normative ways.

For example, like many autistic people, I systematize constantly, and I also have extreme amounts of empathy. Where do I fit in his paradigm? Nowhere.

2) The theory assumes that our autistic brains are an odd version of non-autistic brains. Baron-Cohen doesn’t consider the obvious fact that autistic brain development and cognitive abilities are substantially different from those of neuro-typical people. He takes a brain structure that he considers “normal” (i.e. his own), and then he decides that any other type of brain must simply be a variation of the norm.

3) Baron-Cohen utterly ignores the fact that men are socialized to be analytical, practical, and unemotional, while women are socialized to be intuitive, emotional, and sensitive. Because Baron-Cohen, like many of his peers in the academic and scientific communities, remains oblivious to the cultural context in which he operates, many autistic women still go undiagnosed. We’re just not “male” enough to show up on his radar. 

Like the insult that autistic people lack empathy, a theory that leaves autistic women undiagnosed is not simply wrong. It has serious consequences for our well-being.

In my opinion, most autism “experts” fail to understand autism. The academics and scientists who study us, observe us, test us, and wring their hands over us are neuro-typical. Therefore, they cannot intuitively understand our internal processes and experiences. The best of them listen and learn. The worst of them publish incorrect—and damaging—conclusions.

For my own part, I’ve gotten the best information from other autistic people. We are the true experts on autism. Just as even the most sensitive man cannot be an expert on what it’s like to be a woman, so even the most sensitive neuro-typical person cannot be an expert on what it’s like to be autistic. It’s simple neurology. It can’t be done.

© 2009 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Makes sense to me.

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

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

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

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

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

I think that’s right.

Now for the fun part: upending the accepted theories.

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

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

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

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

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

I think they’re onto us now.

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

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

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

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

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

Looks like word is getting out.

© 2009 by Rachel Cohen-Rottenberg

I’ve always had my doubts about this conclusion.

The most common form of the ToM test is called the Sally-Anne Test. The ostensible purpose of the test is to measure a person’s ability to attribute false beliefs to other people. In the original version, the clinician uses two dolls, Sally and Anne. Sally has a basket, and Anne has a box. Sally puts a marble in her basket and leaves the scene of the action. Anne takes the marble out of Sally’s basket and puts it in her box. When Sally returns, the clinician asks the child where Sally will look for the marble.

To pass the test, a child must say that Sally will mistakenly look in her own basket first, evincing the belief that Sally is unaware that the marble has been moved. A child who fails the test will say that Sally will look in Anne’s box, where the marble is actually located. In Simon Baron-Cohen’s 1985 study of ToM in autism, 80% of the autistic children failed this test. The conclusion drawn is that the autistic children have an impaired (or non-existent) ToM and cannot understand that other people have information and beliefs different from their own.

I am very bothered by this conclusion. Very, very bothered.

I know that most neuro-typical researchers believe they have a “normal” ToM and can understand autistic people rather well. Needless to say, I’m quite skeptical. It’s not rocket science to know that you can read people who are like you, but have a harder time reading people who are unlike you. I would much rather hear an autistic person describe his or her own experience than hear a neuro-typical researcher making statements about how autistic people view the world.

Moreover, I am very suspicious about someone drawing a single conclusion from a psychological test. People are so complex that one child’s answer may be due to a large variety of factors, some of which may not ever have entered the mind of the researcher.

I had an insight into alternative reasons for a “failed” Sally-Anne test when I was at my OT visit this week. During one of the exercises, the OT and I were talking about why I always move my head when I move my eyes, and why I always have to turn my whole body to look at something.  Until I started seeing my OT, it had never crossed my mind that I might look at something without moving my head, or that I might turn my head without turning my whole body. It occurred to me that a certain kind of hypervigilance is at work here, and that this hypervigilance is a feature of Asperger’s Syndrome.

For me, the visual and auditory world is a chaotic, ever-changing place. My eyes are always darting around, trying to make sure that the world is still in order. My sensory processing makes the world seem vast and overwhelming. To me, change is a given. I never expect anything to stay in one place. I’m so attuned to small details that I’m keenly aware when something has been moved, when a pattern has been interrupted, or when symmetry turns into asymmetry. It happens constantly. I like to organize things because it gives me a sense of control over a world that feels like it’s changing in strange and unexpected ways.

So when an autistic child is asked “Where will Sally look for the marble?” perhaps that child is so used to the world being chaotic and overwhelming that he or she automatically assumes that Sally would never look in the place she last saw it. To the contrary: she’d automatically look somewhere else. Being given only two choices—a basket and a box—the child picks the box. Given how the child perceives the world, this conclusion is perfectly rational. It doesn’t indicate a poor ToM at all. It simply indicates that the child believes that Sally processes sensory input like he or she does. Just because the odds are against Sally being autistic doesn’t mean that the child’s conclusion is wrong. The child is simply drawing a conclusion based on his or her own experience.

In this, the child who thinks that Sally will look in the box is no different from the researcher who assumes that that Sally will look in the basket. The “correct” answer is based on the researcher’s own sensory experience. To someone without sensory processing difficulties, the world appears a more orderly and manageable place. A neuro-typical person would figure that the marble would be where he or she had left it. It’s not surprising then, that neuro-typical children “pass” this test 100% of the time.

A better test might be to have Anne move the marble to an unknown place and ask the child whether Sally will think the marble has been moved. If the answer is yes, the reasearcher might then ask, “Where would she look?” If asked that question, the child might just say, “She’ll look everywhere she can.”  That’s the answer I would have given as a child, because my experience was that nothing stayed the same for very long.  If I had taken the test, I would have gotten dizzy and disoriented just thinking of all the possibilities for where the marble might end up. I’d probably have ended up crying in frustration.

Moreover, as I reflect upon how I would experience the Sally-Anne test as an adult, I’m certain that with my auditory processing difficulties, I would need to write down the sequence of events in order to make sure I understood what was being asked. It’s very difficult for me to keep track of auditory information, and I generally need to make it visual in order to more easily grasp it and remember it. If I were to begin plotting out the sequence of events in writing, I’m virtually certain that a diagnostician would conclude that I was attempting to figure out the answer by deductive logic, rather than by using ToM. That diagnostician would be wrong. I would not be attempting to arrive at an answer; I would be attempting to make sure that I understood the question.

If researchers were to keep in the mind that ways that autistic people experience the sensory world, the results might not imply impaired ToM, but a different way of processing sensory information. The results might even imply that autism is a sensory processing condition, and that many of its features derive from sensory sensitivity, problems with sensory integration, and overload.

At least, that’s how it seems to me.

© 2009 by Rachel Cohen-Rottenberg

I’m realizing that much of my anxiety centers around the fact that I cannot guess what people think of me in any given situation. I can’t look at their body language, or their facial expressions, or their subtle nonverbal cues (whatever those are) and make any kind of educated guess. Simply put, unless someone says something outright, I can’t tell whether people like me.

Now, I know that this whole issue should be immaterial at my age. I mean, really. I’m not in high school anymore. But if I can’t tell what people think of me, I have two options:

1. Forget about the subject entirely.
2. Worry about whether I’ve completely screwed up.

Since I’ve been diagnosed with Asperger’s, I’ve found it easier to choose option 1. After all, I’m never going to fit in, so why concern myself with some ideal future in which I’ll belong? There will always be that strange, invisible force field separating me from most of the world. I’ve burned so much energy trying to belong—in academia, in the corporate world, and in religious institutions—that it’s a relief to realize that I’ll always be the odd one out. It’s a done deal. Now I can get on with my life. I can be myself. I can live with integrity. I can be kind to strangers. I can accept other people for who they are. I can love my friends and family. I can have my hyperfocus and my special projects and my general eccentricity. On a good day, it feels quite liberating.

But I’m finding it hard to break the habit of going to option 2. Usually, the anxiety is just a low rumble, but it’s there. I can look back and see that yesterday, people at work liked me. They smiled. They joked with me. They told me what a great job I’d done. But what about today? It’s a whole new day. What if today is the day that I screw up and have no idea that it’s happened?

My anxiety increases if I have to deal with any kind of misunderstanding, no matter how benign. When I misunderstand something, all of my alarms start going off. I think, “Oh no, what did I miss?” At such times, I forget that misunderstandings are common in life. That’s why there is a five-syllable word for them. We Aspies aren’t the only ones who misunderstand other people.

But consider this: Most people communicate nonverbally about 90% of the time. That means that 90% of the time, most people are communicating on a frequency that many of us Aspie folks cannot hear. And that makes this Aspie nervous.

Part of the anxiety is knowing the way that women communicate aggression. We don’t tend to express it like men. Men are very straightforward. Women manifest aggression very subtly. Ever notice the group of girls in the lunchroom looking at someone and giggling? Ugh. I was usually the person being looked at. I think. Or maybe not. Who knows?

I brought up this issue with my husband the other night, and he added a new wrinkle to the whole question. He said that most people do not make a judgment about whether they like someone or not. It’s mostly situational. If a situation is working well, and Person A does something that works for Person B, then life is good and Person B likes Person A. If Person A does not fit into Person B’s game plan that day, not so good. But nothing is written in stone (unless something major happens). Usually, it shifts from day to day.

Just thinking about this way of interacting makes me feel disoriented. It’s so foreign to the way I think. I usually scope people out and get a sense of their energy. I know when I’ve run into someone who is bad news. It doesn’t happen a lot, but when it does, my instinct tells me to tread carefully. And believe me, I ignore my instinct at my peril. If none of my alarms go off upon meeting someone, I generally like and enjoy the person.

Somehow, I don’t think I’m the only one around here who works this way.

© 2009 by Rachel Cohen-Rottenberg