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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Not too much confirmation bias there.

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

Source

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

© 2012 by Rachel Cohen-Rottenberg

© 2011 by Rachel Cohen-Rottenberg

As a child, I was gifted at music and intellectually precocious. I was told that I could succeed at anything I wanted to do. The sky was the limit! I was going to grow up to Be Somebody! And when I say Be Somebody, I mean in a completely and utterly conventional sense. Doors were going to open. I was going to be welcomed into a prestigious position in which I would Do Important Things. In other words, I was going to be in the center of the known world.

On the other hand, I have always felt myself to be on the margins. I don’t mean on the socio-economic margins, although that has sometimes been the case. I mean on the karmic margins — which is to say, on the margins in nearly every situation I have ever entered. Even in my original family, in which I was The Child Destined to Do Great Things, in which people kvelled over me as though it were their life’s work, I was on the margins. I just didn’t fit. Even when I was standing next to them, I watched my family members over there, as though they were in the center of the room, relating to one another, and I was on the outside. For a long time, I was sure that I must have been adopted, because there was no one in the family who reminded me of myself at all.

I felt myself on the margins in high school, and I felt myself on the margins at work, and the feeling rarely left me, even when I was trying so hard to be in the center of it all. Especially when I was trying so hard to be in the center of it all. The only time I didn’t feel on the margins was when I happened to cross paths for awhile with other people on the margins. Then the world felt like home.

Recently, I’ve been finding myself in a state of Great Regret over some decisions I made in my early life. More specifically, it’s that self who was Destined to Do Great Things that is the source of this Great Regret. I’ve been kicking myself over my decision to leave Princeton after my sophomore year, and my decision to leave Berkeley without my PhD. I keep thinking to myself: How hard would it have been to stick it out at Princeton for two more years? I’d have a Princeton diploma! Think of the prestige! And I could have finished that PhD program, even though I didn’t want to become an academic. I’d have a PhD! More prestige! What the hell was I thinking? How could I have been so short-sighted?

All that comes from one version of myself. What’s kicking it all up right now is the other version of myself, the one who knows that I’m on the margins. Here I am, doing my work on autism and empathy on behalf of my dear and beloved autistic people, and wishing like hell that I had some kind of prestige to go with all my critical thought, because it would help the cause. Having spent a lot of time in academia, I’m painfully aware of the pecking order, and I’m keenly aware of where my master’s degree in English puts me.

Was I glad to have the experience of studying for my first master’s degree? Yes. Am I glad to have the experience of studying for my second master’s degree? Yes. But this time around, I am not doing it for the sake of “moving up” in the world, but for the sake of the work I want to bring to the world.

Of course, nothing would ever be enough to get me to a place of privilege in the world as presently constituted. Not as a disabled person. Not as an autistic person. Unless I help to work against hierarchies of power and privilege in the world, I will always be Other. Unless I help the world to move beyond a deficit-driven model of human beings, I will never be Enough — not if I have six PhDs and six fancy titles to go with them. For me, that’s the struggle of being disabled — not the condition itself, but the knowledge that in the eyes of the conventional world, I am less-than, whatever my intelligence and whatever my accomplishments.

In some way, I have always known all of these things, even before I ever imagined that the word “disabled” would adhere to me. I have always felt it. Perhaps it’s that I was never normal. I was always different. I was not different because of what I wore or what I said, though sometimes, those were the expressions of my difference. I could always change what I wore or what I said, although sometimes at great personal cost. But my difference went beyond that. I was different to my core, in a completely unchangeable way, in a society in which deviation from the norm is considered shameful and must be corrected at all costs. For all my passing, I’ve always known that something in the core of me was not acceptable in the eyes of the world, and that it would never change.

And now I know that it’s called being disabled.

All my life, I’ve been standing at the same crossroads, over and over. Do I chase that dream of being in the center? Or do I throw in my lot with other marginalized people? I’ve tried chasing the dream, over and over, and I always end up leaving it behind: I left Princeton, I left Berkeley, I left my high-paying job to homeschool my daughter. But I never acknowledge the other path, because the idea of stepping over to the path that leads to the margins has always felt too frightening to me. There is so much vulnerability there, so much potential for pain, and injustice, and derision, and disrespect, and mistreatment. I crave that acceptance, that conventional mark of approval, that illusion of safety that comes from wanting to Be Somebody, and I’ve resisted all my life the idea that to Be Somebody, in the way that the world understands it, may not be why I was put on this earth.

Lately, I’ve realized that I can’t keep circling around to the same crossroads, over and over. I have to choose the path that leads to the margins because, in truth, it has already chosen me, and it’s exhausting to continue to flee it. I have to throw in my lot with other marginalized people. I cannot continue to give power to the idea that one’s ability to be heard, and respected, and understood should depend upon a diploma, or the trappings of normalcy, or the acceptance of convention — not when most marginalized people will never have a diploma, will never pass for normal, will never live conventional lives, will never be granted prestige or the trappings of power, but will always have to fight just to be heard, just to eat, just to live in a safe place.

Many of us can pass well enough to have all those things, but as Rosemarie Garland-Thomson writes, passing for normal with an invisible disability is a “seductive but psychically estranging access to privilege” that has serious personal and social implications:

“Some of my friends, for example, have measured their regard for me by saying, ‘But I don’t think of you as disabled.’ What they point to in such a compliment is the contradiction they find between their perception of me as a valuable, capable, lovable person and the cultural figure of the disabled person whom they take to be precisely my opposite: worthless, incapable, and unlovable… The trouble with such statements is that they leave intact, without challenge, the oppressive stereotypes that permit, among other things, the unexamined use of disability terms such as crippled, lame, dumb, idiot, moron as verbal gestures of derision.

…

[B]y disavowing disability identity, many of us learned to save ourselves from devaluation by a complicity that perpetuates oppressive notions about ostensibly real disabled people. Thus, together we help make the alternately menacing and pathetic cultural figures who rattle tin cups or rave on street corners ones we with impairments often flee from more surely than those who imagine themselves as nondisabled.” (22)

All my life, the man rattling the tin cup has been one of my people. I’ve known it. I’ve fled from that knowledge, and I’ve fled from that man, but I’ve known it. The suffering of others is a tear in the fabric of the universe, and I am part of that fabric, and I’ve known it for a long, long time. I’ve known it since the day I sat in the synagogue at the age of ten, and watched a film of real Nazis shooting real women and children at the edge of a ditch, and had a stark realization: Those women and children, standing on the margin of that pit, getting ready to feel the bullets tearing through their bodies, were not people to pity and to forget. I was one of them. I was on the edge of that ditch with them — terrified and grief-stricken, but one of them.

I have always known who my people are, and I’ve fled from them, afraid that if I threw in my lot with them, I’d have to give up this mad craving for acceptance, for approval, for the mythic safety of “normalcy,” for the dream of what people once led me to believe was my destiny. And that fear has cost me dearly — physically, mentally, ethically, and spiritually. I’m only beginning to understand just how dearly.

It’s an awful thing to be at war with oneself. It’s an awful thing to keep fleeing and arriving at the same place, over and over. I can’t do it anymore. I won’t do it anymore.

There is no shame in being on the margins. There is only shame in believing that I am too important to be there.

There is no shame in being told that I am broken, that I am lacking, that I will never be enough. There is only shame in believing it.

There is no shame in being ridiculed, or patronized, or dismissed. There is only shame in being the one who ridicules, or patronizes, or dismisses.

There is no shame in being misunderstood. There is only shame in refusing to understand.

There is no shame in being an ordinary person speaking truth to power. There is only shame in keeping silent and forgetting that ordinary people are the ones who heal this world.

No matter what happens to me in this life, I will always find my people. All I have to do is to reach out my hand.

Sources

Garland-Thomson, Rosemarie. “Integrating Disability, Transforming Feminist Theory.” Feminist Formations 14, no. 3 (Fall 2002): 1-32. http://mtw160-150.ippl.jhu.edu/login?uri=/journals/nwsa_journal/v014/14.3garland-thomson.pdf.

© 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

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.

© 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

His writing immediately spoke to me, in part because I’ve lived my life from the perspective of an anthropologist in a foreign culture, and in part because I recognize so many of my own experiences in his words. I am not very far into the book, but what I’ve read so far has sent my thinking in all kinds of new directions. I am being careful not to read too much at a time without articulating my thoughts on it; the book is so rich that I could lose track of all its implications if I didn’t pause to reflect.

Among the many passages that I’ve found powerful is the following, which describes the social role of a person who becomes ill:

“A person’s ordinary social roles — mother, father, lawyer, baker, student, and so forth — all become temporarily suspended when he or she falls ill. The individual becomes a ‘sick person,’ which relieves him or her of some or all of the ordinary obligations, depending on the severity of the illness.

The suspension of his other duties does not mean that the person playing the sick role has none at all. Quite the contrary; he is saddled with one big obligation: He must make every effort to get well again. In our own doctor-ridden culture, this means that he must seek medical advice; he must take his medicine and follow the doctor’s orders. This expectation mandates the proper role of the sick as one of passivity. The sick person is excused from work or school, household duties are suspended or at least limited, and connubial relations may be put on ice. But in return, he must devote full time to getting better.” (Murphy, 19)

The temporary suspension of numerous social roles in favor of a single imperative to “get well” is a trap that is well-known to many of us. Sometimes, this suspension of other obligations is necessary and welcome. For instance, when I had surgery to remove a degenerative disk in my neck a few years ago, I spent several weeks recovering my strength before I was able to get back to “normal.” And I well remember the feeling that my only role was to heal. At the time, I felt great comfort in knowing that others would take care of business while I recovered.

But the situation becomes much more complicated and troubling when a person moves beyond a short-term illness into a chronic condition. A couple of years ago, I went through a particularly low period with being autistic. During my 50 years of ignorance about my condition, I had pushed myself unmercifully — physically, psychologically, and emotionally — to the point of burnout. At the same time, I had been prescribed benzodiazepines, medication that was wreaking complete havoc with my sensory and emotional life. For awhile, I needed assistance with basic tasks, such as food shopping, housecleaning, and cooking. It was painfully difficult to ask for this help, and my self-esteem suffered significantly.

Two years later, I take much better care of myself. I have adapted to my disability, I have gotten off the benzodiazepines, and I have healed from the burnout. As a result, I no longer need such assistance. But the legacy of having once required it has cast a pall over my life that I have never completely dispelled.

Until now, I’d never known why. I’m beginning to understand, though.

With a condition such as autism, Down Syndrome, or multiple sclerosis, there is no “getting well” in the conventional sense. There can be therapies, accommodations, and the amelioration of certain symptoms, but there is no pill, no surgery, and no treatment that will remove the condition and render the person “normal.” Having any of these conditions, therefore, automatically puts one into the category of “sick” people (think “autism epidemic”), with a concomitant obligation to “get well.” But if you have a condition from which you can not “get well” according to the standards of the larger culture, you are completely unable to fulfill the one social imperative that the world gives you. And if you fail at that one obligation, then the quality of all the other social roles that you might have — father, mother, husband, wife, friend — immediately becomes suspect.

Thus, you end up with the widely held belief that the partners of disabled people are heroic for sticking around, and that they do so only out of pity, as though disabled people are not full and equal participants in the process of their own lives. And you get a great deal of talk about the numerous (and very real) challenges that the parents of disabled children face, to the exclusion of talk about the numerous (and very real) delights that such parents find in their disabled children.

You get T-shirts, mugs, and tote bags that say, “I love someone with autism.” You don’t get T-shirts, mugs, and tote bags that say, “Someone with autism loves me.” I’ve considered making up some items with that message on them, but I think it would only depress me to find out how few I would sell.

Of course, defining us as “sick” generates a great deal of money, energy, and emotion in the race for a “cure.” After all, if our one imperative is to “get well,” the culture is going to make damned sure that we do it. And, inevitably, the only way to get other people to join the search for a cure is to generate FUDD (fear, uncertainty, doubt, and dread) about living with a disability. In the autism world, Autism Speaks is masterful at this form of gamesmanship, which has the net effect of making the parents of autistic children absolutely terrified of what might happen to their children without all the latest treatments, without 40-60 hours per week of expensive therapy, and without that elusive “cure.”

The fact that there are millions of disabled adults who have created happy and fulfilling lives, without full-time treatment and without a cure, seems to matter not at all. We are ignored, and why? We have broken the obligation of being a “sick” person. We have not remained passive. We have not lived our lives in a quest to “get well.” We have lived our lives in a quest to live well as the people we are.

As a result, we find ourselves in the vortex of a great deal of distortion for wanting to simply be at peace with ourselves and carve out a meaningful life. It’s as though, having given up our “patient” status, we’ve committed some sort of cardinal sin. Thus, you get autistic self-advocates, who do not want to be cured, being told that we’re faux autistics. If we reject the role of the “sick” person, with the one overriding obligation to get better, it’s as though we short-circuit the cultural wiring. The response is often along the lines of, “If you refuse to see your autistic mind and body as sick, and you refuse to accept the social role that having such a mind and body entails, then you must not be autistic at all.”

That logic, of course, is not logic at all, which is an indication of how deeply threatening stepping out of our assigned role feels to other people. And the illogic means that we face psychological warfare of the worst kind: we find ourselves verbally stripped of the very condition that is the source of our struggles, our triumphs, our sensitivity, our discipline, and our awareness. In those moments, it’s as though our entire life histories have been erased.

Were we not threatening a deeply held cultural value, the response to us might be somewhat more productive, along the lines of, “I give you a lot of credit for your strength and your accomplishments, and I celebrate that you have a happy and fulfilling life. But please be aware that my adult autistic son, who tries to self-injure all day long, who bloodies himself on a daily basis, who gives himself concussions when he’s stressed, is in a state of irremediable pain that no accommodation can fix. Do you understand why I want to move heaven and earth to find a cure? And, until that help arrives, can you give me some insight as to how I might understand what is happening to him?”

That would be a conversation worth having. Unfortunately, I’ve never seen it actually happen.

In the absence of that conversation, I understand the wholesale rejection of words like “disease,” “disorder,” and “sickness” in the autistic community. I’ve gone to great lengths to distance myself from words like those, and I’ve always felt a great deal of discomfort about it, too. After all, what is so shameful about having a disease, or a disorder, or a sickness? Isn’t rejecting those words just playing into the hands of those who see disability as the worst possible thing that could happen? Don’t we need to reclaim those words and empty them of all of their dehumanizing connotations?

I think we do. But it’s difficult to do so when being labelled diseased or disordered puts you into the trap of having only one social role, and it’s a role you can’t fulfill. Under those circumstances, it’s entirely understandable that the response would be to reject the label altogether.

As I sit here thinking about all of these issues, I’m reminded of someone I never met, but about whom I know a great deal: my husband’s late wife, Karolka, who died of ALS ten years ago, at the age of 55. One of the most memorable things that Bob has ever told me about her has to do with the whole issue of disease and cure.

Even before the diagnosis of ALS was confirmed, Bob and Karolka sought out all kinds medical interventions to try and heal her — or to at least slow down the progression of the condition. And on a regular basis, they would hear from a friend or community member with another great idea for them to try. At a certain point, Karolka decided that it was time to stop chasing a cure, and to start accepting and living her life. Even after she’d made that decision, people would periodically show up with new ideas, but she had moved on, and when she did, she found a great deal of joy.

She never referred to ALS as “my disease.” She always referred to it as “my condition.” And lest you think that she was engaging in feel-good, New Age, mamby-pamby, politically correct nonsense, please allow me to disabuse you of that notion. She had absolutely no time for bullshit of any kind, and the last thing on her mind was a desire to fulfill someone else’s idea of how to talk about her life. But in speaking about ALS as a condition, rather than as a disease, she gave herself a great gift: She made herself an active participant in her process of living and dying, rather than a passive victim of an enemy beyond her control. And she released herself from the obligation of having to “get well,” when getting well was out of the question.

I’m not saying that every disabled person has to see himself or herself the same way. And I’m certainly not saying that it’s not okay to want a cure for one’s condition — although there are a great many troubling consequences to having a cure in a culture in which our main social obligation would be to avail ourselves of it.

What I’m arguing against is the whole idea of the obligation altogether. Far too many people will never have typical neurologies, typical bodies, typical minds, or typical ways of being. Giving disabled people an obligation we can’t fulfill means that we become people of less than equal worth. And it also means that we have very little support to fulfill a number of other roles — such as mother, father, husband, wife, son, daughter, friend, neighbor, and community member — that we want and need, just as everyone else does. The overriding quest for a cure means that an organization like Autism Speaks spends most of its budget on research, and only 4% on services for autistic people living in the here and now. What is this “autism advocacy” organization advocating for, anyway? It is advocating for us to assume one role, and one role only — that of a patient, passively waiting to get better. It is not advocating for us to fulfill our birthright — to participate fully in all that the world offers to typically able-bodied people.

A few years back, after I received my Asperger’s diagnosis, I told a friend of mine who lives in Jerusalem, and who himself lives with a chronic disability. His response was something along the lines of “My sister, I will pray to Our Creator to heal you.” I was rather aghast at his response, as loving and as well-intentioned as it was, but I couldn’t quite articulate why. I wrote something back to the effect of “Please don’t pray for my healing, but for my ability to manage my life with strength and dignity.”

I never head from him on the subject again. But if I had it to do over, I’d expand on my request for his prayers and say, “Please, don’t pray for my healing. Please pray for my strength. Please pray for my dignity. Please pray that I have supportive friends and a loving community. Please pray that I continue to find meaningful work. Please pray that the world stops seeing me as broken. Please pray that others don’t react to me with fear and prejudice. Please pray that I live a long and happy life.”

Perhaps I’ll still ask for those prayers.

© 2011 by Rachel Cohen-Rottenberg