Journeys with Autism

A Critique of the Empathy Quotient (EQ) Test: Part 3

August 12, 2011 Rachel Ableism, Alternative Theories of Autism, Critiques of Autism Theories, Empathy, Marginalization, Mind-Blindness, Modes of Thought, Myths about Autism, Theory of Mind (ToM)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

12 comments

A Critique of the Empathy Quotient (EQ) Test: Part 2

August 9, 2011 Rachel Ableism, Alternative Theories of Autism, Critiques of Autism Theories, Empathy, Marginalization, Mind-Blindness, Modes of Thought, Myths about Autism, Theory of Mind (ToM)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s not different in the least.

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

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

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

21 comments

A Critique of the Empathy Quotient (EQ) Test: Introduction and Part 1

August 6, 2011 Rachel Ableism, Alternative Theories of Autism, Critiques of Autism Theories, Empathy, Marginalization, Mind-Blindness, Modes of Thought, Myths about Autism, Theory of Mind (ToM)

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

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

Definitely agree
Slightly agree
Slightly disagree
Definitely disagree

The resulting test scores are interpreted in the following ways:

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

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

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

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

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

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

The critique consists of these components:

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

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

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

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

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

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

In The Empathy Quotient, Baron-Cohen and Wheelwright draw on a definition of cognitive empathy as “using a ‘theory of mind’ (Astington, Harris, & Olson, 1988; Wellman, 1990) or ‘mindreading’ (Baron-Cohen, 1995; Whiten, 1991).” According to the authors, cognitive empathy encompasses “setting aside one’s own current perspective, attributing a mental state (or ‘attitude’) to the other person (Leslie, 1987), and then inferring the likely content of their mental state, given the experience of that person.” (Baron-Cohen and Wheelwright, 164)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

54 comments

From Empathic Response to Emotion to Cognition: An Illustrated Journey

August 3, 2011 Rachel Empathy, Modes of Thought

I have a new therapist whom I like very much. She is an Asperger’s specialist and teaches at one of the local colleges. She has a lot of respect for me and understands disability issues far better than any therapist I’ve ever met.

We’ve been talking lately about my biggest challenge, which is my tendency to be an unshielded empath. Being an empath can be a great gift, when I am able to channel it well, and being an unshielded empath can be a great help in certain situations, such as when I am entrusted with the care of a child. But it’s quite distressing when I feel myself the recipient of misdirected hostility or any form of creepiness; and feeling all the conflicting emotions in a crowded room is not the most enjoyable experience, either.

I’ve gotten better at shielding as I’ve grown older, but much of the time, I have a strong empathic response before I even consciously realize what’s happening. It’s as though a person’s energy becomes part of my atmosphere. When that happens in any kind of negative way, I need to take care of myself while the whole thing plays out.

In the past, the therapists I’ve worked with have all talked about the necessity for developing my shielding. But my new therapist understands that shielding will only get me so far. When the energy slips in before I even know it, putting up a shield after the fact is irrelevant. And certainly, the level of shielding required to keep out everything I need to deflect would be so thick that it would numb me out and completely alienate me from other living beings. That would be bad.

So the question is not “How can I better shield?” but “How do I care for myself when I’m having an intensely empathic response?” I’ll lead you through the process of how I experience these things, noting along the way the new things I’m learning.

Consider the following scenario, which is a composite of various things that have happened to me in my life.

I’m sitting on my porch on a beautiful summer day. The flowers are in full bloom. The sun is shining. All is well with the world, and I’ve got nothing but love in my heart for my fellow human beings:

And then, someone comes strolling down the street and into my idyllic moment — someone with, shall we say, a low level of respect for women. And, as he is strolling down the street, he decides to throw some very creepy energy in my general direction. Before I even begin to consciously register what’s happening, here’s what has become of my otherwise beautiful, sunshine-y day:

I feel as though an oppressive weight is bearing down on me. I am annoyed. I am perplexed. Then, I notice that the guy who has decided to mess up my idyllic moment is wearing the following t-shirt:

And while I am still registering the full impact of his attire, he says to me with a leering grin:

If I happen to be in touch with my deeply outraged inner feminist, I might come up with a snappy rejoinder:

More than likely, however, I will have gone past the point of empathic response into pure emotion, and as such, I will find it somewhat difficult to find the proper words. I will feel so disgusted, so depressed, so upset, so anxious, and so angry that the inside of my head will look rather like this:

At this point, I rush inside the house, throw all the locks, hyperventilate, and begin stimming like crazy. First, I pace up and down:

Then, I rock:

And hand-flap:

And put things in order:

Now, I would like to note that my new therapist has recently given me two very important pieces of information that I find very helpful in this stage of the process:

a) Emotion always precedes cognition. Being someone who feel things acutely, I find that to be a very helpful fact. It means that it’s going to take me a bit longer than the average person to get through the emotion. It also means that when I get to cognition, I will analyze the living hell out of everything.

b) Tony Attwood says that when you’re in a state of high emotion or upset, it’s important to get your heart rate up. I’d never thought of this before, but it makes sense. In fact, it may be what stims like pacing, rocking, hand flapping, and organizing my entire house are all about.

The important thing is to take care of myself in the midst of the upset. So, to get my heart rate up, I will finish stimming and go out for a very brisk walk — so brisk, in fact, that I reply rather tersely to any friends and neighbors I might meet on the way:

“Big hurry. Bye.”

Ultimately, I walk with such determination that my friends and neighbors may be somewhat taken aback:

Finally, though, I arrive at the moment in which emotion subsides and cognition takes over. At this point, I begin analyzing the hell out of the creepy situation:

“I wonder whether his mother had low self-esteem. Was her father a violent alcoholic? Did she have a distorted body image? Or was she simply a victim of the misogyny that flows like a river through our culture?”

“Patriarchy sucks.”

“How the hell can he expect to get a date with a T-shirt like that? It makes absolutely no sense.”

“Perhaps there are women with low self-esteem who actually like T-shirts like that???”

“Perhaps he’s very bored. I should probably have some compassion for him.”

“Perhaps he’s very lonely. I should probably have some compassion for him.”

“Of course he’s lonely. He wears offensive T-shirts.”

“Okay, so what he said and did has nothing to do with me. It’s all about him. This I know.”

“I will make a note to discuss this episode with my therapist.”

“I will also write about it on my blog. Yes. That is exactly what I shall do.”

And then, once I’ve thought things over enough, I generally decide to move on and start thinking about other more pleasant things.

Like Idris Elba in The Wire:

Or Idris Elba in Luther:

Or Idris Elba, in general:

And then, I’m happy. See how easy?

29 comments

Guest Post Series: Widening the Disability Perspective

August 1, 2011 Rachel Guest Posts

The August post in our Widening the Disability Perspective series comes from Secret Pepper Person, who blogs about life with her three adopted special-needs kids at The Secret Pepper Society. I’m honored to introduce her as a contributor to the series.

We Are All Unique by Secret Pepper Person

When I was asked to do a guest post on this blog, I began making mental excuses. After all, I consider myself more of a Roseanne Barr than a seasoned author.

My personal blog is not serious stuff. It is the informal journal of the humorous trek through daily life, documenting silly anecdotes regarding my adopted second family of three special needs children: The Boy who has a rare genetic condition called Ostegenesis Imperfecta type 3; The Baby, a three-year-old who was born in a hallway and left for dead, sustaining severe brain damage; and The Teenager, who is tooling along the autism spectrum highway blasting over speed humps and getting waylaid by blinking traffic lights.

I also refer to my grown adult children as The Genius and The Artist in my blog. Their monikers are self-explanatory.

Why the mental excuses regarding being a guest poster, I wondered? After all, I am intelligent enough!

Why, in Catholic school in the 1950’s I was always plunked in the Blessed Virgin classroom, which every one of us knew contained the higher functioning children — even though I was constantly threatened by the nuns with demotion to the average St. Joseph classroom because of my “poor scholastic motivation.” I knew when I obtained the highest scores in the history of the school on the year-end achievement tests that they could no longer justify their threats.

Score one for “poor motivation.”

Besides being “smart enough” to post on a respectable special needs site, I have always had a penchant for the underdog. Surely that should count for something?

Case in point: fourth grade.

In fourth grade, our school groups were no longer clearly delineated by saint’s names, and the individual classrooms now contained a hodgepodge of academic abilities. Our fourth-grade classroom was left unsupervised on a daily basis until the teacher returned from her lunch. The supervision was generally left in the hands of the two highest achievers in the classroom, who promoted crowd control by having students read out loud. (Remember, we’re talking 1950’s here. Can you imagine this arrangement flying now?)

One stormy day, our teacher asked me to supervise the class, surprising everyone. Especially the two high achievers.

Must have been the barometric pressure.

When I stepped up to the podium, I chose children to read out loud who had never once been chosen. Kids who struggled. Kids who, looking back, were obviously learning disabled or lower functioning — not the superstar kids who read day after tedious day. I remember the joy of helping them pronounce a difficult word, but mostly I remember the joy on their faces for being chosen.

When the teacher returned, I was in deep doo because we were not finished with the reading assignment. Not even close. One of the high achievers nanny nanny boo booed on me for choosing poor readers.
So much for the not-yet-coined “inclusion” theory, as the teacher never asked me to supervise again.

Score one for foreshadowing.

So if I’m smart enough and empathetic enough, why the hesitation? I am a professional, after all, who is actually employed to work with special-needs children and their families! Yes, people. They actually pay me.

I eventually realized that I’m hesitant to post because I’m different, and I know it.

No, I’m not talking about my obvious self-diagnosed ADD or dyslexia. After all, I was in my 30’s when I finally realized it wasn’t the actual word “seldom” in the song, Home on the Range, that was discouraging.

You know what I’m saying here: “Where seldom is heard a discouraging word.”

What I mean is that I see things a little differently because I have a quirky sense of humor. I long to be eloquent, but it exhausts me mentallyto even attempt to be eloquent. I disobey the rules of grammar because I love run on sentences. Call me Faulkner. And I love sentence fragments. Call me Imagistic.

I have a shaky memory like the The Teenager, who recently underwent IQ testing in preparation for her 18th birthday and the emancipation that will never come. When the psychologist asked her who Martin Luther King, Jr. was, she replied, “I don’t know. The Son of God?”

I long to emulate people, like Nicole Nicholson, who pen perfect words, such as those in this small segment regarding autism from a poem entitled, Color (a modest plea):

…And if we are all a spectrum, then I am amethyst.
Royal. Aubergine. Keep listening. There is a little boy in Brooklyn, enchanted by lampposts, who is sable and emerald just like the giant streetlight gods that he admires…

I tried to write poetry once. My haiku was a reflection of my nursing skills and my lack of talent, and was slightly different than the above prose.

Colonoscopy
There will be no snow skiing
Not for you today.

I discovered that I do not have the gift to pen breathtaking words – much like my dyslexic son, my brain-damaged baby, and my politically incorrect teenager. Now that I think about it, I’m in good company.

I follow many blogs of deep thinkers, but mostly look at the pictures because deep thinking makes me befuddled. When you’re ADD and dyslexic, you need
a quiet environment to contemplate deep thoughts. This is not happening in my house.

I used to feel inadequate about these personality quirks and deficits, but somewhere in my early 50’s, I realized that being who I was created to be was the most comfortable fit of all.

In the long journey that we parents of special needs children embark on, we focus so much on our children and their differences that we tend to lose sight of reality. Because, realistically people, if you sat down and thought about it we are all a tad special needs ourselves. And no I’m not being flippant, and I am not a casual observer of the special needs population. I live the life, and I wearily trudge through the life, sometimes amused and sometimes exhausted from participating in the agony of the excruciating fractures. The seizures. The inappropriate public outbursts. The bullies at school. The stares. The 17-year-old in diapers at night. The endless IEPs.

I could run on and on with my beloved sentence fragments, but I’ll spare you the grammatical horrors and leave you with one thought — a thought important to me as the special parent of three special needs children. Well, actually five special needs children when you throw in The Genius and The Artist.

If I could post about one thought, it would be a not so deep, and not so eloquent, but very simple reminder that, while we are embracing our children’s special gifts, we need to embrace ours as well. You aren’t hard on your children. Why be so hard on yourselves?

We are all unique in God’s eyes, and He is absolutely no respecter of persons. He made some folk clear like diamonds, some deep and complicated like Tiger’s Eye, and some sparkly like mica. And then there are those individuals, like me, who need to be polished a little before you can find their unique markings. We all have gifts, and we all have deficits, whether we admit it or not.

And finally, I would also issue a good reminder not to write poetry if you suck at it.

9 comments

For the Young Literal Thinker: Good Children’s Books about Idioms

July 27, 2011 Rachel Childhood, Literal Thinking, Parenting

A few weeks back, my post On Literal Thinking was republished on Shift Journal. In response to it, a commenter made the following excellent point:

I wonder sometimes if all the anecdotes that describe autistic children as literal thinkers may be creating a self-reinforcing stereotype. Any young child, whether autistic or not, who had never seen broken dishes wouldn’t know how fragile they were. The child might reasonably assume that if she had been told to toss them, they must be made of something that wouldn’t break, just like a rubber ball or other toy. In most families, if that happened, nobody would think much about it after the mess was cleaned up. But if the child happens to be autistic, the story ends up on the Internet as an example of literal thinking. That leads to more parents of autistic children posting such stories, and so forth.

She’s right about the dangers of some of the anecdotes that make the rounds on the Internet; after all, not everything an autistic child says or does is atypical. But in this case, there is a difference between the way an autistic child and a non-autistic child might respond to an idiom that he or she has never heard before.

In the example in my post — about a mother asking her daughter to “toss the dishes” into the sink — the child was definitely old enough to know what happens to dishes when you throw them. My guess is that the literal meaning took over in the child’s mind and got in the way of practicalities. When I look back on my neurotypical daughter’s early years, I have no memory of her misreading an idiom in that way.

In fact, I don’t remember her taking idioms literally at all. If she’d never heard the expression before, she’d probably look at me and say, “Mom! What are you TALKING about?” So, for example, if I told her to “shake a leg,” she wouldn’t just shake her leg, as an autistic child might. She’d know that the meaning was figurative and that she didn’t understand it. Similar anecdotes about autistic kids usually don’t reflect that understanding.

The whole conversation got me thinking about a couple of children’s books I once bought to teach my daughter about idioms. They were on one of the homeschooling curricula that we made use of, and they turned out to be a lot of fun. It occurred to me that the books might come in handy for parents who want to teach their autistic kids what idioms mean and how they work, so I thought I’d share a little bit about them.

The ones we have are called In a Pickle and Mad as a Wet Hen, both by the wonderful Marvin Terban. (He’s written two others — It Figures! and Punching the Clock — but since I’ve never read them, I can’t vouch for them.) Both In a Pickle and Mad as a Wet Hen explain common idioms very clearly and succinctly, and both are full of great illustrations to delight the visual thinker. In a Pickle contains fewer idioms than Mad as a Wet Hen, but is still a very useful book. I got them both because, well, the more idioms the better, right?

Here are couple of interesting examples from In a Pickle:

White elephant: A totally useless possession that you’d like to get rid of.
As the book explains, the expression derives from ancient Siam (now Thailand). In days long ago, a white elephant was considered sacred. When the king was angry at someone, he gave the person a white elephant. Because it was sacred, the beast could never be made to work. It would simply lounge about until its owner ran out of money caring for it.

To get up on the wrong side of the bed: To be grumpy
As Terban tells it, the ancient Romans thought that it was unlucky to get up on the left side of the bed. (The Latin word for left is sinister.) So if you got up on the “wrong” side, you’d probably have a very bad day, which would make you grumpy!

And here are two of my favorites from Mad as a Wet Hen:

To pull the wool over someone eyes: To trick someone
According to the book, in the days when judges wore big woolen wigs, a judge’s wig might sometimes slip over his eyes so that he couldn’t see. A lawyer who thought he had tricked the judge might brag that he had “pulled the wool” over the judge’s eyes.

Are you pulling my leg?: Are you trying to fool me?
Terban explains that, in bygone days in England, a robber would use a cane or a wire stretched across the sidewalk to catch a person’s leg. Of course, after the person fell, he was robbed.

Neither book explains the derivation of each and every idiom, but there is enough information in each one to keep things interesting.

I especially like both books because most of the idioms and their explanations are accompanied by humorous illustrations that reflect the literal meaning of each expression. While I tend to think in text, the text usually brings up a strong visual image, and reading these books sometimes feels like looking at a (very stylized and artistic) reflection of what goes on in my own mind. So, whether your child is a text-based thinker, a visual thinker, or both, these books may very well reflect the ways in which his or her mind works and, as such, may provide a good introduction to the world of idiomatic meaning.

13 comments

Interview Posted on the Autism Blogs Directory

July 26, 2011 Rachel Interviews

Hi all –

Kim Wombles was so kind as to do an interview with me about the new Autism and Empathy website. The interview is now posted on the Autism Blogs Directory.

Thanks, Kim!

One comment

On Language and the Spectrum of Experience

July 20, 2011 Rachel Belonging, Community, Marginalization, Myths about Autism

I tend to tread very carefully in the general discourse about autism, because stereotypes and overgeneralizations abound. Given the wide nature of the autism spectrum, and the varied experiences of autistics and family members, general pronouncements about the nature of autism, as opposed to particular statements about personal autism experiences, generally leave me very frustrated and depressed.

In response to living in a world in which people seem to argue endlessly about which autism is the “real” autism, I’ve made a commitment to reading a wide range of personal narratives. It keeps me from feeling frustrated by the constant generalizing, and it helps me to keep a broad perspective about the wide variety of experience in the world of autism and disability. I am constantly reminded that my experience of autism and disability is not everyone’s experience of autism and disability.

Unfortunately, I recently stumbled across an article that generalizes so dramatically from the specific that it’s taken me over a week to collect myself and respond. The article was written by a woman in my community, Prudence Baird, who has a 16-year-old son with Asperger’s. My husband knows Ms. Baird and has spoken highly of her; I have never met her personally, but she and I are both involved with the local independent weekly. Eager to know more about her, I decided to go to a website for women writers that she helps to run, just to see what sorts of things she writes about.

That’s where I found her article, Naked Motherhood. It discusses autism in highly charged and pejorative terms. (It also discusses the story of Jeremy Fraser, a story about which I have very strong feelings. In the interest of limiting the length of this piece, I’m not going to address those feelings here.)

The terms that Ms. Baird uses to describe autism wouldn’t be a problem for me if she were speaking only to her own experience; as I see it, how she experiences her life and frames her responses to it aren’t open to argument or judgment. However, she takes a giant leap from her experience to very generalized statements about autism that I consider to be highly prejudicial and potentially very destructive.

I want to make it very clear from the outset that I do not believe that Ms. Baird had any ill intent. I do not think she meant to do harm, or that she harbors ill-will toward autistic people, or that she doesn’t see the positive aspects of autism. My purpose is to discuss the impact of her words on me, and to speak to the fact that her words have the potential to do harm, regardless of intent.

Ms. Baird begins her piece with a personal anecdote in which her son is woken from sleep and becomes irate and aggressive:

The popsicle stick-thin figure in rumpled pajamas who is my 16-year-old son stands in the darkened corridor in a fighter’s stance, small white hands clenched into fists. His face, lit by a shaft of light from the laundry room, is contorted with rage at being roused from his slumber—probably by me shutting the dryer door.

…

“Honey, you’re half asleep; go back to bed.” A light touch Casey’s shoulder. Mistake. A tiny fist flies—I duck; a torrent of abuse follows.

“Just shut-up!” yells older brother wrenching open his bedroom door. Then, “Mah-ahm, you don’t ever punish him; he thinks he can get away with this.”

Casey tries to scramble past me, “Fucker! I’ll kill you!” I seize a second jab in mid-air, gently guiding the wrist to Casey’s side as I hold him firmly by the elastic of his P.J. pants.

“It’s late,” I soothe, drawing closed my older son’s bedroom door. “Let’s get you a cup of warm milk.”

But there will be no soothing tonight. The door to Casey’s room slams, and for emphasis, opens and slams harder. I count with eyes closed. Finally, his bed
creaks.

I very much admire that Ms. Baird responds gently and mindfully to her son. As far as I’m concerned, that’s the right response. No argument there. However, I find myself apprehensive about the fact that she says nothing about what her autistic son is going through — why he’s upset at being awakened, why he has such difficulty self-regulating, why he is in so much pain — but concentrates exclusively on her experience and on the impact on her elder son:

I pivot, open the bedroom door of my eldest son who is sprawling on his bed wearing drawstring shorts and Borat T-shirt. His laptop is open to what I hope is homework. He glances at me from under brows stitched together with almost two decades of frustration; a look too jaded for his 18 years.

I well understand that siblings of autistic kids have their own issues, and I am not at all suggesting that Ms. Baird talk about only the subjective experience of her autistic child. I am asking only that everyone’s experience have a place in the narrative.

I worry when I read an obviously well-honed piece, written for public consumption, that does not include any words about the subjective experience of the autistic young man who is at the center of the discussion. Yes, autism can be hard on a family — and it’s also very hard on the person with the condition. I have read innumerable stories about the impact of autism on the family that fail to even guess at the experience of autistic people. Each time I do, I have the same uneasy feeling that I have reading Ms. Baird’s piece — that others will see autistic people merely as burdens and sources of pain, rather than as full-blooded human beings in need of the same empathy and respect as anyone else.

As an autistic person, my heart sinks when read these sorts of narratives. In a world in which the voices of autistic people are so relentlessly ignored, every iteration is another moment of invisibility.

After all, when people read narrative after narrative in which autistics are discussed only with reference to the difficulties of others, the impact on the ways in which people view and treat autistic people can be profound. Many of us have had the disheartening experience of disclosing our diagnoses, only to find that people immediately feel sorry for our family members for having to live with us — even when our family members take great delight in us and do not feel sorry for themselves in the least.

For example, when I was first diagnosed and going through a difficult time, one of my extended family members said to my husband, “Take care of yourself. Sometimes, you know, the caregiver suffers worse than the patient.” I was aghast. Fortunately, my husband clarified that he is not a caregiver, that he is not suffering, and that I am not a patient — that, in fact, he is my husband, I am his wife, and we are very happy together, just as we were before the diagnosis.

Such are the sources of my unease — an unease that turns to outright pain with the next sentence:

“This is autism,” I whisper. “Please. Punishing isn’t the answer.”

As I said earlier, I admire Ms. Baird’s approach to her son; that isn’t what pains me. And I am willing to guess that, in her household, “This is autism” is a shorthand for “This is your brother’s experience of autism.” Unfortunately, because the article was published on the Internet, many people will have no idea of what those words might mean in the context of her family. Many people will only see the words “This is autism” and believe that all autistic people melt down after being awakened, take a swing at family members, and threaten them with bodily harm.

The pain that I feel about it is particularly intense because the person who wrote those words lives in my community, where my Asperger’s is well-known. I wonder whether people who read these words will look at me now and think, “Well, she certainly holds it together well when she’s sitting on her porch, but she must be hell-on-wheels inside her house. The next time I stop by to admire her flowers, I’d better keep my distance and be careful not to set her off.”

They would have absolutely no reason to see me in that light. None at all. But I know that there are people who will see me through the lens of that distortion because, once upon a time, when the only thing I knew about autism were dreadful stereotypes, I thought that all autistic people were scary, too.

My concerns on this score only increase when Ms. Baird launches into some of the most fear-inducing words about autism that I have ever read:

Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.

I absolutely cannot tolerate it when people indulge in these kinds of generalizations about a condition that exists on a very, very wide spectrum. I understand and have compassion for Ms. Baird’s experience, but it is her experience. Yes, it is an experience shared by other families, but it is by no means the universal experience of autism.

Like Ms. Baird’s son, I have Asperger’s. Have my marriage and my parenting partnership died “on the rocks of exhaustion, despair, and blind self-interest”? No. Has my autism severed “familial bonds”? No. Has my autism worn down my family with “recriminations, blame, and guilt”? No. Quite the contrary, in fact.

My neurotypical husband tells me early and often how happy he is that we found each other, and how much I help to ground him and to help him feel at home in the world. My neurotypical 18-year-old daughter tells me that I’m the best mother she could ever ask for, because I listen to her, give her unconditional support, and treat her with respect and kindness. My friends find me to be a trustworthy and sensitive person. Like most autistic people, I am neither aggressive nor violent; in fact, it gives me physical pain just to think about people being violent toward one another.

In my experience, we autistics are as different from one another as the members of any other group. I have worked with autistic teens who are quite aggressive; I have also worked with autistic teens who are among the most gentle, kind, and sensitive people I’ve ever met. And, from my association with autism parents, I know that autism families have experiences that are all over the map. I also know that, when they have similar experiences, they can respond to them in a very wide variety of ways.

Consider the following:

Many autism parents have not had their marriages and their families torn asunder. In fact, a 2010 study showed that, in the United States, the divorce rate for parents of autistic children is 36%, while the divorce rate for parents of typical children is 35%.

Many autism parents have found that raising their autistic children has strengthened their families, and has made them stronger and more nurturing people.

Many autism parents feel that if family members and friends distance themselves, it is not the fault of the autism. It is the fault of the people who refuse to make room in their lives and in their hearts for their children.

Many autism parents are living fulfilled lives with autistic children whom they enjoy. Are their lives difficult? Of course. Are they happy? Much of the time, yes.

In short: Many autism parents, after the initial shock of the diagnosis and the steep learning curve that it entails, do not experience autism as a disaster that has befallen them. Consider the words of K, the mother of a son with autism and apraxia, who blogs at Floortime Lite Mama:

I realized that the most important story that I will ever tell, is the one I tell myself.

About me and my life.

And that I am not just the central character of my life

But also the author

Its most important audience

And the narrator

And so the story I started to write, has become a story of gifts and gratitude and love

And not a story of loss and fear and guilt

And I see my child as different, even gifted

And I stopped seeing him as broken

I have come to see the difficulties of my life

But am still deeply aware of its essential sweetness

And I find that I am not living in a sad story

Or a make-the-most story

Or even a second-best story

And that the story that began so promisingly with “once upon a time” does end on a “happily ever after”

Because this is my story

And that is how I write.

These words reflect K’s experiences and how she has framed them. I am not at all suggesting that everyone has the same experiences, or that all autism experiences could, by any stretch of the imagination, be framed in this way. I am simply pointing out how varied our experiences and our responses are. If Ms. Baird had simply spoken in the first person, about her own experiences, I wouldn’t have a problem. Not at all. If she finds her life as an autism parent unbearably difficult, I respect the voice of her experience, and I respect her right to speak honestly about it.

But from my perspective, drawing conclusions about an entire group of people based on a subset of experience is not helpful, to say the least. It’s nothing less than stereotyping. And stereotyping of any group, whether based on race, class, religion, sexual orientation, or disability has serious consequences for the ways in which people are treated at school, at work, and in the community.

Unfortunately, the article continues on in the same vein. I hardly have the words to describe my response to the next paragraph:

Autism makes no sense; there are no navigational tools or comfortable rest stops along the path families must traverse on their way towards the inevitable—when they must blindly entrust their disabled loved ones to the care of others when they themselves are spent, the marrow of their bones turned to dust, and all their loving ministrations poured out onto the dry sand of life’s injustice. In the final analysis, the only real measure of the energy expended is the significant shortening of the mother’s lifespan and the distance the other family members put between themselves and the pain that just won’t go away.

It’s taken me awhile to untangle all the reasons that I find these words so deeply offensive. I will begin by pointing out the obvious fact that autism does not exist separately from human beings. So when people talk about autism in such pejorative terms, they are not talking about a disembodied abstraction.

I am not arguing whether autism is intrinsic to the person or a condition that can be separated from the person. I’m not going to generalize about the lives of millions of people. Arguments on that point tend to be fruitless, because how people render identity is very complex and very personal. I only know how it is for me — I consider autism intrinsic to who I am — but how it is for me is not the issue here.

What I want to point out is the simple fact that autism is always manifested by human beings. In the final analysis, when people talk about their experience of autism, they are talking about their experience of people with autism. And when they make sweeping, generalized, unsubstantiated claims that autism significantly shortens the lifespans of parents and tears families apart, autistic people become stigmatized by association.

Please understand: I’ve got a condition that is already poorly understand and highly stigmatized, and sometimes, all I really want in life is for the rhetoric to become more nuanced, not more strident. All I really want is for people to be able to see me as a human being, without stereotypes clouding their judgment. Because as difficult as it is to have autism, it’s even more difficult to go out into my community as an openly autistic person with this sort of language flying around. And for a great many people I know, it makes it impossible to come out of the closet at all.

In the past, I have found myself very isolated and lonely because I’ve been afraid that other people will believe the stereotypes about autistic people. It’s been terribly painful to go out into the world being my friendly self, eager to help and to be part of my community, only to feel the energy shift in very, very clear ways when I disclose my autism.

Does it happen all the time? Thank God, it doesn’t. I have found many people who take me as I am and do not rely on stereotypes. Sometimes, they even ask me about my experience of autism and how it manifests in me. For my recent job interview, the parents of the little guy for whom I am now a caregiver did just that. But when I applied for the position and disclosed my Asperger’s, I was afraid that the stereotypes would precede me and that I wouldn’t even be considered for the job.

I shouldn’t have to live with that kind of fear. No one should. And one of the ways to create a world in which no autistic person needs to feel that fear is to stop engaging in generalized pronouncements, for good or for ill, about what autism is.

I honor people for whom autism is a gift, and I feel tremendous pain for people for whom it is a curse. But a great many of us tread the vast grey area between the two poles. All across the spectrum of experience, we all need to be heard.

65 comments

Guest Post Series: Widening the Disability Perspective

July 16, 2011 Rachel Guest Posts

This month’s post in our Widening the Disability Perspective series comes from Flannery, who blogs with honesty and wit about life with her son Connor at Living on the Spectrum: The Connor Chronicles. I’m honored to introduce her as a contributor to the series.

My Son Connor: Living with Severe ADHD

My bloggy friend, Rachel, has been kind enough to ask me to guest post today and write about ADHD. She is so very smart, and a gifted writer, that I fear I won’t do her justice. Please don’t judge her awesome blog by my less than impressive writing. K? K.

Initially, I was going to politely decline Rachel’s request. Certainly, it wasn’t because I would deny contributing to the awareness she spreads, but because I can barely stand to think, speak, or write about ADHD. On my blog, I harness the power of humor and swearing to cope, survive, communicate, and escape from the reality of this disorder.

This thing, this ADHD, it runs our lives. It dictates everything about our lives, our schedules, our communication, our social life… It is the monster that cannot ever consume enough to be satiated.

My son’s ADHD was diagnosed three months before he turned four and was classified as severe. There was no surprise in this, as we had diagnosed him by age two, when he had stopped napping for good.

It’s not easy to convey the full impact of ADHD to people who haven’t experienced it in their family. The best way I can describe it is to say that my toddler could not physically stop himself from moving. He could not control his body or his mind, and at times it seemed like he was coming out of his skin. It was often painful to watch, painful to see my child miss out on the experience of real play because he could not stop spinning or running long enough to sit and engage with others his age.

With this in mind, and after careful consideration, we began medication. It helped tremendously in the beginning, before we discovered that his metabolism is unusually fast, and the positive results wear off in 2-3 hours. Since then, we’ve been on a roller coaster of trying different medications to help him, and we are still in the midst of that.

They say that ADHD never travels alone, which is an attempt at conveying to parents that there are usually other underlying disorders that accompany the diagnosis. Until we started medication, the ADHD was like a big, heavy blanket with tiny holes. It obscured the mild Asperger’s Syndrome that my son was diagnosed with a few months later, that had only shown itself as small quirks underneath the ADHD.

What is interesting and, perhaps, maddening about ADHD is that so many characteristics mirror those of autism. For example:

ADHD involves hyperactivity, which can also be a trait of Asperger’s.

ADHD involves an inability to focus for sustained periods of time, which can also be an Asperger’s trait.

Children with ADHD typically lag behind their peers in social and cognitive development by 30%, as do children on the spectrum.

Children with ADHD often lack impulse control, as do some on the spectrum.

If my son carried only an ADHD diagnosis, he would not receive an annual IEP and would not receive many of the special education supports that he does now. One could argue that because of the biology of ADHD, that it surely lies somewhere on the “spectrum” of disorders, perhaps at the mild end. But it is not classified as such, and so those children that do not have a secondary diagnosis struggle through school. In that regard, the secondary diagnosis has been instrumental in getting him support.

In my son’s case, it has been crucial to try to control some of the ADHD symptoms in order to address the deficits of Asperger’s. He is overwhelmed by stimuli, noise, movement, activity. He does not always understand facial expressions or nuances of speech, and will sometimes ask what something means, and sometimes not. Calling something by a different name, such as referring to a motorcycle as a “chopper,” is upsetting and confusing for him. Sometimes, a simple change, like taking a different street home, will cause him to become extremely agitated.

For a long time, we found ourselves studying a particular behavior and questioning whether it was “an ADHD thing or an Asperger’s thing.” We’ve come to realize that the two are intertwined, and the importance isn’t in the origin of the behavior, but in our response to it.

Of all the challenges we’ve come across, the single most challenging and heartbreaking one is the aggression. When frustrated or angry, my son will often hit or bite because he is not able to control his impulses. This has resulted in many dismissals from child-care facilities, and there is even one nationwide disability services agency that refuses to serve him because of the aggressive tendencies. So far, not one doctor or therapist can tell me if or when he might grow out of this. It his biggest challenge, and we worry that we will still be dealing with aggression when he is 12 or 14.

This may seem like a bleak picture. However, there has also been tremendous progress and growth in many ways. There have been great strides in introducing new foods to his limited menu, huge increases in vocabulary, and a growing awareness of how his actions affect others. In short, despite the continuing challenges, there is forward momentum.

As our son ages, we can only hope that his hyperactivity lessens and his focus increases. With his amazing sense of humor, zest for life, and boundless energy, he is surely destined for great things once he learns self-control.

In the meantime, we work diligently with his psychiatrist for medication monitoring, and with his behaviorist who teaches him social skills. The road is long and winding, but the view along the way isn’t always dark. It’s also full of surprises and laughter.

14 comments

Cognitive Empathy at the Dinner Table

July 12, 2011 Rachel Empathy, Marriage

I’ve long felt that everyone has difficulty with cognitive empathy and perspective taking when it comes to minds that work differently from their own. A couple of weeks back, I had an interesting experience along these lines.

At the dinner table, I asked my husband Bob the following question:

Do you think I’m odd?

Now, if you’re on the spectrum, you probably realize that I asked the question because I wanted to know what he thought. If you’re not on the spectrum, you might wonder whether the question were a setup, along the lines of Do you think I look fat?

My husband, who is neurotypical, was absolutely stymied. Now, please understand that he is a very empathetic man in every sense, and that he is also very socially adept in conventional ways. He can read most people extremely well. He’s very sensitive. He’s the sort of person who can listen to you and make you feel like you’re the only person in the room. He can also can walk into a large social situation and chat it up with anyone. I’m often in awe of his social graces.

But when I asked him the question, he hesitated. He looked very uncomfortable. In fact, he had a look on his face that I recognized immediately. It’s the one that I’m sure I have on my face in most social situations. It was as though he were thinking about all the possible ways he could respond and couldn’t figure out which one was the right one.

I felt a pang of recognition.

It was very clear to me that he wasn’t able to figure out by my facial expression, my body language, my nonverbal cues, or the look in my eyes where I was coming from. So I decided to help him out in a way that I wish more people would help me out: I told why I’d asked the question.

“Honey,” I said. “I’m asking you a straightforward question to which I want a straightforward answer. I’m interested in how you see me.”

I could see he was still stuck. His neurotypical brain was saying, “I really have to finesse this somehow.” And the part of him that knows that I’m nothing if not direct was thinking, “Okay, I should just be a mensch and answer the question.”

So I helped him out again. “Really,” I said, “you must know me well enough by now to know that I don’t ask a question to which I don’t want the answer.”

He seemed relieved, and he said, “No, I don’t think you’re odd. But I do think you’re different.”

I found that helpful. The thing is, he couldn’t figure out why.

We talked more about it the next morning. He was still curious as to why I’d asked the question. Our ensuing conversation was a crystal clear example of the fact that like minds understand like minds, and that my experience of other people is very different from his experience of other people:

Bob: “Why do you want to know what I think of you?”

Me: “Because I’m interested.”

Bob: “But what does it matter? My opinion is purely subjective. It doesn’t say anything essential about you.”

Me: “Oh, okay. Let me clarify. I wasn’t asking you to tell me something essential about myself. I was asking what you thought.”

Bob: “I don’t understand that. You’re the only one who knows whether you’re odd or not!”

Me: “You’re right. Inside myself, I feel perfectly normal. After all, I’ve always been me. But I’m not always able to read how other people see me, because I don’t think like they do, and your opinion helps me imagine how another person might view me. In other words, I’m information gathering.”

Bob: “Okay. I see. That makes sense.”

Me: “I’m glad you understand now.”

Please note the sheer number of words expended to explain my state of mind and where I was coming from. He could not tell until I verbalized it.

Sound familiar? I thought so.

The way I see it, everyone has difficulty empathizing with experiences and ways of thinking that seem foreign to their own.

It’s not an impairment. It’s just called being human.

25 comments

« Older Entries Recent Entries »

A Critique of the Empathy Quotient (EQ) Test: Part 3

A Critique of the Empathy Quotient (EQ) Test: Part 2

A Critique of the Empathy Quotient (EQ) Test: Introduction and Part 1

From Empathic Response to Emotion to Cognition: An Illustrated Journey

Guest Post Series: Widening the Disability Perspective

For the Young Literal Thinker: Good Children’s Books about Idioms

Interview Posted on the Autism Blogs Directory

On Language and the Spectrum of Experience

Guest Post Series: Widening the Disability Perspective

Cognitive Empathy at the Dinner Table

New! Available through Amazon.com and other fine booksellers

Categories

Archives

Blogs by Autists

Non-Autism Disability Blogs

Positive Autism Parenting Blogs

Resources and Websites

Sensory Integration Resources

Spectrum Artists

Tests and Quizzes

Autism Blogs Directory

Safe Space Policy

Copyright and Terms of Use

Journeys with Autism