I can remember everything in vivid and brilliant detail: The green and gold striped jumper I dressed her in before bringing her home for the first time. The pink and teal portable crib, and how we lugged it across the country from California to Connecticut, and then to Paris and Amsterdam. The Paris light. The sandbox outside Notre Dame. The baseball shirt and helmet she wore biking. Our excitement sitting in her room on the turquoise carpet, beginning our lessons on her first day of school.

My recall has always been very vivid. A photograph can awaken a whole array of visual, sensory, and emotional memories.

I have a photograph of my mother standing outside the door of the house I grew up in. It is 1966. She is standing in a sundress on the landing, leaning against the railing. My brother appears behind the screen door. He is five. Whenever I look at that photograph, I feel as though I could simply walk through that screen door and everything would be as it was. My parents, now passed away, would be in the kitchen drinking instant coffee, and my brother and I would decide what game to play, or whether to go down to the drugstore for candy and baseball cards. I feel myself there, a girl of eight or nine, innocent and hopeful about everything to come.

Lately, I’ve been feeling that my capacity for such vivid recall is a mixed blessing. On the one hand, it’s as though no part of my life is ever really gone. I can go back in a moment and relive the memory as though it had happened just a few minutes ago. I can see it, smell it, taste it, feel it. On the other hand, there is the jarring moment when I realize that it’s gone and that I can’t go back, not really. Is this why I’ve taken so much for granted about time? Is this why I’ve always felt that things would go on forever — because they seem to go on forever in my memory of them?

Until yesterday, I’d always believed that everyone experienced memory in this way. But when I described the way I remember to my therapist, she was amazed. She kept saying “Wow!” with a look of intense surprise, as though she’d never heard anyone describe memory in the same way.

The way I relive my memories is why I can become very emotional about events and people from the past; the memories don’t fade into obscurity. Old events can creep up on me and give me great happiness, or deep pangs of regret, or tremendous sadness.

These days, I’m painfully aware that all of my vivid, precious memories are in the past. My little girl is no longer little. She’s no longer even a girl, but a young woman. And while I am excited to see her begin college in a beautiful place that we both love — and while my vivid memories of my own college years only add to the excitement of this moment — I’m also sad to feel time passing, and to know that so many things will never come again.

New things will take their place, certainly. But I loved the old things. And I still do.

© 2011 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

He goes on:

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

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

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

The professor continues:

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

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

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

Professor Baron-Cohen concludes his answer with the following:

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

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

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

Certainly, we deserve a more empathetic response.

© 2011 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2011 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s not different in the least.

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

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

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

© 2011 by Rachel Cohen-Rottenberg

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

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

The resulting test scores are interpreted in the following ways:

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

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

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

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

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

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

The critique consists of these components:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2011 by Rachel Cohen-Rottenberg

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?

© 2011 by Rachel Cohen-Rottenberg

— Robert Murphy, The Body Silent, page 30

I’ve been having a discussion lately with an email correspondent who was mentored by Robert Murphy, and who is himself disabled. He asked me about my feelings concerning the neurodiversity movement, and his questions gave me a chance to further understand the complicated nature of grief and disability. Some of my thoughts in this piece come directly from my portion of our emails, and others reflect the places that my thinking has gone in the midst of our ongoing discussion.

I want to be clear that I agree with many of the core tenets of the neurodiversity movement, which I consider to be no different than the core tenets of the disability rights movement, or any other human rights movement — that all people deserve respect and safety, that all people have the right to be front-and-center in conversations that affect them, that personhood should not be defined by an arbitrary standard of normal, and that there are many ways of being, learning, thinking, and perceiving. However, I no longer identify myself with the movement, in part because I saw how easily I was beginning to slip into polarizing positions that I now consider untenable — such as the absolute insistence that autism is so essential to the person that, by curing the autism, you want to get rid of the person.

I can understand that position; it very aptly describes how I feel about myself and the way in which autism is woven into the fabric of who I am. I personally don’t wish to be cured; were you to take away the autism, I would be someone else, and I do not wish to be someone else. What I wish for most fervently is to feel welcomed as an equal, just as I am. However, these feelings derive from my personal experience. There are a lot of different manifestations of autism; some people do not feel especially happy with being autistic, and some autistic people would like to be cured. Would I prefer that all autistic people be happy just as they are? Sure, but I don’t have to live in their bodies. I just have to live in mine.

And then, of course, most able-bodied parents who hear an autism diagnosis begin grasping at straws about how to proceed, because nothing in life has prepared them for going down the road ahead of them. When you combine the fear, uncertainty, doubt, and dread generated about disability in general with the fact that few able-bodied people understand the experience of disability at all, is it any surprise that most parents grasp at the “cure” straw at one time or another?

When you’ve got a parent in this position, responding with “cure the autism, destroy the person” is extremely counterproductive. It only ends up sounding like an indictment. Parents feel pushed up against the wall and criticized, so they stop listening at the very moment that they most need to hear from us.

Of course, there are people seeking a cure who take extreme positions, and who believe that autism is the worst scourge to hit mankind since the Black Death. And there are people who lose themselves in their anger that life didn’t work out according to plan. There is really no talking to people when they’re in that state of mind.

But a lot of people are on the fence about the cure issue, and they’d be open to a conversation if they felt that we respected where they are in their lives.

What’s most lacking in the conversation about a cure, from the neurodiversity perspective, is the acknowledgment that parents of autistic kids go through a grief process. I have to admit that I feel a lot of discomfort when I hear parents talking about grieving their children’s autism; sometimes, I just want to yell, “Are you grieving me? Because I don’t need your grief. I need your respect.” But, whatever my feelings on the matter, it’s essential that the grief process be recognized and respected if we’re to have any kind of constructive conversation at all.

From what I’ve observed, the grief comes from three different sources.

The loss of the idealized normal child
This grief is largely about the parents. I’m not saying that as a judgment at all; in fact, I understand it completely, and I’ve experienced my own version of it when looking at my idealized self. The way that parents hold on to the imagined normal child derives directly from the fact that, in American society, being normal is the most important value. The socially constructed idea of normal exercises a tremendous hold on the imagination. Aspiring to be normal is more important than aspiring to be a great teacher, or a brilliant researcher, or a bringer of peace to a war-torn country. In fact, it is considered to be the prerequisite to doing just about anything else. And that is because anyone who is even minimally aware knows what normal looks like, understands that he or she is supposed to aspire to it and, at one time or another, believes that normal and natural are exactly the same thing.

Of course, they aren’t. Normal is a social construct, first and foremost. In every society, it’s a different creature. In 21st-century America, normal looks something like this:

Walking is normal.
Speaking is normal.
Seeing is normal.
Hearing is normal.
Having white skin is normal.
Being a Christian is normal.
Being heterosexual is normal.
Socializing in large groups is normal.
Having an Anglo-Saxon surname is normal.
Celebrating Christmas is normal.
Speaking English is normal.
Having European ancestors is normal.
Being middle class is normal.
Being educated is normal.
Having children is normal.
Being happy is normal.
Believing in God is normal.

Of course, this list is far from exhaustive; after all, being normal is a very complex business. But if you look carefully at even this very partial list, what becomes clear is that being normal is not normative. Anyone with a characteristic not on that list falls outside the bounds of normal, to a greater or lesser degree. Having several characteristics not on that list pushes one further toward the margins. If you put together all of us who do not fulfill all the criteria, you get the majority of people on this planet.

But the illusion by which we live is that most people are normal. This illusion is a prime example of Murphy’s assertion that “the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on.” When it comes to the myth of normal, those words are especially apt.

And part of what’s “really going on” is that parents of autistic children find themselves dragged, often kicking and screaming, out of the land of normal — a terrain that they had formerly taken entirely for granted. This phenomenon leads to the second source of grief.

Leaving behind one’s own normality
Having an autistic child means that an able-bodied parent can no longer lay claim to being normal. I don’t care if that autistic child grows up to win the Nobel Prize, marry the President’s daughter, and buy a retirement home in the Swiss Alps; the minute a parent gets that autism diagnosis, normal is over. All done. Kaput. Never to return.

You know those angels with the flaming swords, guarding the path to the garden of Eden? They’re the same ones standing between able-bodied autism parents and their formerly normal selves.

You hang out with marginalized people and, sooner or later, you get marginalized. Anyone who has ever been in a public school knows this to be the case. Parents, remember the kids you didn’t want to hang out with, the ones you avoided like the plague, the ones you secretly (or not so secretly) made fun of, the ones by whom you didn’t want to be tainted by association?

Now your kid is one of them — which makes you one of them.

This inconvenient truth is what leads people to scream their heads off about how it must be the vaccines that cause autism, or the environmental toxins, or anything other than genetics because — gah! — if autism is genetic, that must mean that you’re one of us.

I’ll let you in on a little secret: You are one of us. Bwahahaha! Welcome to our world.

Sometimes, I wonder whether parents exclude autistic people from the conversation about autism in an attempt to maintain the illusion of their own normality. Perhaps, in their heart of hearts, they want to believe that their autistic children will never grow up to be us — as wonderful as we are — so that the parents can somehow disassociate themselves from us and return to the grieved-for land of normal. I’m not sure, but it certainly seems that there is a disdain for autistic adults in the autism community that borders on the irrational. I’m not sure exactly where it all comes from, but I think that a desire to avoid being tainted for life by us is certainly part of it.

The fact is that, like it or not, autism parents have entered the condition of most people who live on this earth. Few of us are normal. In fact, the people who fit the criteria of normal are a very distinct minority, indeed. But for this minority, all kinds of accommodations, privileges, and services are available — a point that leads me to the third source of grief.

Feeling frightened about the autistic child’s future
My feeling is that grief is a natural part of the process of having a disabled child and, contrary to somewhat popular opinion, it’s not always about wanting a different child. It’s often about just being scared shitless on behalf of the one you have. You watch your kid getting bullied, you see the pain the child experiences from being made to feel apart, and you worry about whether your adult child will find a partner, have even a small circle of supportive friends, and be happy. And these fears are not unfounded. A great deal of the time, the unhappiness that we face is not caused by the autism itself, but by the bigotry and cruelty of other people.

As a parent, I see nothing wrong with grieving that your child is going to face prejudice and attempts at exclusion for his or her entire life. You’d have to be living in a fantasy world to think that a disabled person is going to avoid all that in society as presently constituted, and the question of the child’s happiness under those circumstances is crucial.

What any parent of any child wants is that doors open for the child, not close. And most people understand that being normal means that you have access to the best jobs, the best educational opportunities, and the widest range of social opportunities. Normal people get to apply to college and, if they get in, they just pay their money and show up. They don’t have to fill out several pages’ worth of information about the accommodations they need and hope like hell that those accommodations are deemed “reasonable” (by non-disabled people, no less!), so that they can go to the college they’ve worked so hard to get into.

No, normal people already have those accommodations provided for them, without even asking. It’s a wondrous thing.

And what happens when you don’t have those accommodations provided as a matter of course? An easy life, it isn’t. It’s natural to grieve that. Of course, the main thing is not to get stuck in the grief and turn your kid (and yourself) into a victim.

So what do we do?
Do we focus on a cure, do we focus on making autistic people “indistinguishable from peers,” or do we work to build a world in which all the people who fall outside the realm of normal have equal access and equal rights? If we set out to do more than one of these tasks, how do we apportion our time and attention?

I consider it vital that we not make autistic people hold all the responsibility for change. Certainly, there is nothing wrong with trying to help an autistic child communicate effectively and navigate the world, but doing so cannot be a substitute for fighting to change social and cultural attitudes about normality. And the reason is simple: We will never be normal, and idle dreams about elusive cures are a distraction from the work that needs doing.

I passed for normal, to a greater or lesser extent, for most of my life. I still can, in certain contexts. Does that mean that my problems are solved? No. Does it mean that I can walk through the world, assuming that I will be respected and included? No. My difference becomes apparent eventually and, given the wrong circumstances, immediately. Being married, having a child, earning a graduate degree, writing books, and owning a house — none of it changes the fact that the quality of my life is deeply affected by the attitudes I encounter regarding my difference, by the degree to which people accommodate it, and by the ways in which people exclude me on the basis of it. No amount of passing, and no amount of achievement, will ever change that.

Autism parents, do you not want to know this?

I have always known that I am different. Others have always known that I am different. At some very blessed and happy times in my life, other people have seen my difference as a very good thing. And at some very low and very unhappy times in my life, other people have found my difference something to be derided, shamed, even beaten out of me.

Over the course of my life, I’ve acquired skills and learned to adapt, but at my core, I’ve never really changed. I’ve always been autistic. My context changed — sometimes for the better, sometimes not — and those changes had a tremendous influence on whether I succeeded at work, in relationships, and with friends. They made the difference between being abled and being disabled. And the impact upon my self-esteem and self-respect was directly proportional to how much support and respect I received.

So, if you aim for apparent normality as a way to resolve your fears about your autistic child’s life, please be aware that you will not fully solve the problem. Yes, helping your child to navigate the world is crucial, but it can’t be the end of the story. Your child will always be different. Your child will always know that he or she is different — as will others. Your child will never blend completely. Accepting a socially constructed reality called normal, as though it is available to your child means, to borrow Murphy’s words, being complicit in one of the “human artifices whose purpose is to perpetuate society, not clarify it.”

Perpetuating the status quo will not help anyone who has left the land of normal. Clarifying the status quo and fighting to change it means creating a world in which many millions of people — including your child — will finally take their place in the full light of human dignity.

© 2011 by Rachel Cohen-Rottenberg

Of course, I said yes. I had never put together a presentation like this one before, but it was a lot of fun to do, and I’m very happy with the result.

I’ve love to hear your comments. If you are a parent or a teacher, did you find the information helpful? And if you are autistic, how do you remember your own school experiences?

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For those with visual difficulties, and for others who prefer reading text, here is a transcript of the video, slightly edited to remove references to the photographs in it:

Autism in the Classroom: Personal Reflections
A Presentation by Rachel Cohen-Rottenberg

The Lewis School
Valparaiso, Florida
May 5, 2011

My name is Rachel Cohen-Rottenberg.

I’m a 52-year-old wife, mother, writer, and artist with Asperger’s Syndrome. I was diagnosed at 50. I’m married to a wonderful man named Bob, and I have a beautiful daughter named Ashlynne.

In order to give you some insight into what your autistic students might need in the classroom, I’d like to share my memories of my years in elementary school.

I was raised in Brookline, Massachusetts. I attended the Edith C. Baker School, a public elementary school, from the second grade through the eighth grade.

I had symptoms of autism, but no one picked up on them.

As a child, I was extremely sensitive to sensory stimuli, especially sound, and I felt the emotions of the people around me acutely.

Fascination and alarm: Those two words describe the nature of most of my responses to the physical and emotional world throughout my childhood.

I did not speak a word until I was 2 1/2, but I could read when I was three years old. I taught myself.

As a child, I had great difficulty making eye contact. Even now, when I look into a person’s eyes, I have such a profound experience of the person that I feel his or her soul coming directly at me. When I was a child, looking into the eyes of another person was an overwhelming experience.

My small, very conservative school gave me the structure to indulge my fascination with the world while protecting me from the kinds of experiences that inflamed my anxiety.

At school, we had many, many rules, and they governed nearly every aspect of the school day. We had rules for how to enter the cafeteria, with whom to sit, and at which table. We had rules for how to form a line and use the proper side of the stairway. We had rules for what constituted proper school attire.

The rules created a predictable, structured environment in which I could thrive.

My school environment was very spare and quiet. We did not have all the visual and auditory distractions of today’s world — no iPods, no computers, no cell phones. All of our learning was text-based. For me, it was the perfect environment.

My teachers demanded respect from all of us. And they did an excellent job of returning it. But they were not my friends. They were better than friends. They were allies. The vast majority were kind, patient, and supportive.

My teachers created an environment in which I developed faith in myself. I could never have achieved so much without this solid basis.

As you work with your students, please keep in mind that autism is not intrinsically a condition of deficit, but of overabundance — an overabundance of sensitivity to sensory and emotional phenomena.

I spend every day living with an experience laden with perception. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world, in every detail: color, texture, pattern, and motion.

The intensity and acuity of autistic perception causes many of the behaviors that can be so perplexing to non-autistic people. Stimming is a way to calm our nervous systems, and it serves to block an abundance of input by creating an abundance of output. Concentrating on visual or auditory patterns allows us to bring some measure of control to our perceptions of an overstimulating world.

Living with this level of intense perception is a great deal of work. Please know that your autistic students are working very hard, all the time, to filter and process sensory and emotional information.

It may not look as though they are working hard. Please look beyond what you see to what lies beneath the surface. When you do, you will go a long way toward helping your students succeed.

Thank you so much for taking the time to watch this presentation. Please feel free to contact me through my blog, Journeys with Autism (www.journeyswithautism.com),with any questions you might have.

© 2011 by Rachel Cohen-Rottenberg

I’ve never been shy about my feelings concerning the deficit model of autism. I object to its focus on “impairments” and its dismissal of our gifts as “splinter skills.” I dislike the hierarchy of human value it implies and, every time it leads a parent to believe that his or her autistic child will never feel love, I want to cry.

Lately, though, I’ve come to feel that the deficit model isn’t simply prejudicial, but entirely misleading.

In my view, the language of deficit hides the intrinsic nature of autism. In my experience, autism is not a condition of deficit, but of overabundance. I’ve never viewed my difficulties as deficits, because I spend a great deal of my daily energy dealing with an experience that is laden with perception and feeling. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world: color, texture, pattern, and motion. I have a vivid emotional and visual memory, both for events that have just occurred, and for experiences long past. I feel other people’s emotions immediately upon meeting them, and it’s in my nature to see things from a multiplicity of points of view.

When I look at autistic people who have been deemed “low-functioning,” I see people whose sensitivities make me look absolutely wooden. Our presentation is very, very different and, obviously, I can do a great many conventional things that others cannot. But intuitively, I know that they are not dealing with perceptual deficits. I see people whose overabundance of feeling and perception is both fundamentally different from mine and altogether overwhelming to their ability to function in any kind of normative way.

It’s this relative lack of normative functioning that brings in the deficit model. And, in terms of helping people to qualify for services and obtain needed assistance, it’s not a bad model. After all, if you need a service, you need to be able to document why. The problem is that once the deficit model is in place, it becomes impossible for most people to see beyond it. If you start talking about your internal experience, you get dismissed, because what becomes important is how you appear and what you do, not who you are or what you feel.

And how you appear is generally what shows up on an assessment, because the questions are geared to the surface level, and not much else. So, for example, if one were to ask whether I hold tenaciously to my own feelings and ideas, it might appear that I have difficulty seeing multiple points of view. But part of the reason I am so tenacious is that I’ve gone through a process of looking at things from so many different points of view that I would drown in the sea of other people’s perceptions if I didn’t make a judgment as to where I stand and what I believe. In arriving at a conclusion, I work through an immense number of possibilities and, once I’ve gone through the process, I generally form a strong opinion. It doesn’t mean that my mind is closed; it means that I’m not going to be convinced out of an idea or a feeling simply for the sake of social form or expectation.

Apparently, because I hold firmly to my conclusions, I can appear to be unempathetic to those who do not think as I do. If people only knew how intuitively I bounce from one person’s perception to another, how intensely I feel other people’s feelings, and how much mental and emotional discipline it takes to parse experiences that aren’t even on most people’s radar, they would see that my way of thinking is anything but inflexible—or easy.

Fortunately for me, I can speak, write, and express my internal life to other people. Where would I be if I didn’t have words? Where would I be if I weren’t able to navigate the world in a language it understands? Then I’d just look like a walking deficit model. And people without the empathy to see what’s going on below the surface would call me unempathetic, incapable of seeing things from other points of view, and without feeling. And they would be very, very wrong.

In describing autism as an experience of abundance, I don’t want to minimize the difficulties of living a life of intense perception, especially for those who cannot function in conventional ways. What I want to do is to signal that far from lacking the basic essentials of humanity, we feel our humanity acutely, and we suffer when others choose not to honor it.

© 2011 by Rachel Cohen-Rottenberg