Empathy and Perceived Empathy

by Gavin Bollard

Today, I just want to say a few words about the perception of empathy.

Right now, my mother is in hospital. Her hospitalisation was sudden and unexpected, but she is okay. I’ve checked. I’ve received an email from my father, and my wife rang him later during the day. I’m happily convinced that everything is fine and that, for the immediate future, her main priority should be rest.

She lives too far away for a “quick visit,” and I haven’t contacted her directly yet. Unless I hear of changes in her condition, I’m best off giving her time to heal.

No doubt, once she comes out, she’ll rouse on me for not having gone to panic stations and talked to her directly. The thing is that I can’t do anything, and chances are that I’ll end up calling during her nap time.

Does that make me less empathetic?

Some would say yes, but I think that sometimes, I put more thought into the physical well-being of people than I do towards self-serving information-gathering exercises.

It doesn’t mean that I’m not worried or that I don’t care.

The perception of this empathy by others, however, is different altogether. Other people think that unless I’m waking her up and asking her how she is, then I don’t care. She has doctors and nurses doing that already, and I’ve spoken to them. They’re better qualified to give me a rundown on her condition.

Addendum: I wrote this post a few days ago but have been too busy to post it. I’ve since spoken to my mother a couple of times, and she’s home and getting better.

About the Author: Gavin Bollard is an adult with Asperger’s and the father of two Aspie sons. This piece originally appeared on his blog, Life with Asperger’s, and is reprinted here by permission.

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No empathy? My you-know-what

by Lydia Wayman

Oh, it’s not always pretty, is it?  But you buckled up, and I know nothing but how to be completely honest… so here we go.

Call me spoiled.  If I run out of money, Mom will back me up.  No questions.  I guess I really am spoiled.  Mom is like my Daw (grandma, Mom’s mom) was in terms of giving, both materially and with her time.  I have yarn to knit with and crafts to sew; I have Disney t-shirts and pink hoodies for no real reason; I have new boots, because Mom wanted me to have them.  And then, I see Mom like three times a week, just the two of us.  Yeah… I guess I am a bit of a spoiled girl.

But, well… I don’t like to go running to Mom for money.  And the money I have to spend on a week’s worth of groceries is only lasting me 4-5 days.  So, the end of the week leads to things like tonight.  I had to choose from: stale tortilla chips with processed cheese, canned applesauce, plain white rice, plain canned carrots, dry Rice Krispies… oh, or a plain egg which I’ve had twice today.  I also have two kinds of juice but don’t want the sugar, as dinner was rice with the end of the butter and that’s enough carbs.

So what’s a hungry girl to do?  Well, I grabbed a Diet Mountain Dew.  The carbonation would fill me up without any calories.

And then I got to thinking.  I’m currently spending probably 60% of my food budget on diet soda.  I know how bad it is for me.  Trust me, I know.  I also know that I’ve tried a dozen times to give it up, and… still.  Still, I go back.  I’m telling you, it’s bad both for my body and my wallet.

Sitting here, pondering that atrocity, I noted the receipt Mom brought home to me to enter into my checkbook; she picked up Elsie P’s food for me tonight.  $45 and some odd cents.  It’ll last her, oh, 2 weeks?  She’s currently eating about $3.50 a day in food and her weight is holding steady at 9.2.  She looks perfect.  She eats a/d food, which is easy to digest and has lots of extra calories.  She can’t eat any old cat food, as she’ll throw it up and lose too much weight.

So at this point, I have two options: Good cat food/cat, or diet soda.

Right, like not treating my cat right was ever an option.  And so, tomorrow, let the meltdowns and sleeping and migraines begin, because I’m kickin’ the DMD.

Who said we don’t have empathy, again?

About the Author: Lydia Wayman is a young woman with autism and the author of two books: Living in Technicolor: An autistic’s thoughts on raising a child with autism and Interview with Autism. This piece first appeared on her blog, Autistic Speaks, and is reprinted here by permission.

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What’s Wrong with the Computer Metaphor of Autism

by Kristina Chew

The computer is often cited as a metaphor for how the autistic mind works. Temple Grandin notes that her mind works according to the same associative processes that we use in surfing the Internet: We click on a link on her website about equipment for handling livestock and then find ourselves at one for computer simulations of flocking birds, because their behavior has many similarities to cattle forming herds. “Each memory that I have comes up like a website,” Grandin noted in a 2000 article in Computerworld . Grandin has also compared her mind to a library of videotapes to explain how she “thinks in pictures.” And a journal for speech-language pathologistsnotes that autism is not something that one “outgrows,” and that, “‘Using a computer metaphor, it’s like rewriting code around bad code in a computer program.'”

Metaphors of the machine have long been used to describe persons with autism; Bruno Bettelheim’s account of “Joey: The Mechanical Boy” appeared in Scientific American in March of 1959. The machine metaphor can even be seen as embedded in the DSM-IV diagnostic criteria for autism, as it lists “stereotyped and repetitive motor mannerisms eg [sic]: hand or finger flapping or twisting, or complex whole-body movements” as examples of the “restricted, repetitive and stereotyped patterns of behaviour, interests and activities” used to diagnose autism. Kids with autism are said to move their bodies in a machine-like manner.

Jim and I had a a “eureka” moment a few years ago when, at the annual COSAC conference, we heard a speech pathologist, Ann Gerenser, speak on autism and apraxia. She mentioned that, due to difficulties with auditory processing combined with an apraxic child’s difficulties with motor planning, children are prone to imitate the sounds of mechanical devices. “Of course that’s why Charlie makes the sounds of his grandparents’ garage door opening and closing, when under stress!” we said to each other. We have since noted that Charlie has a routine of the beeping of the microwave oven (signalling, the waffle is ready!) and of his various toy computers, including Alphabert with his opening sequence of musical beep notes. A machine’s sounds are ever the same and, for a child like Charlie who struggles to listen to and to say the sounds of language all around him, a huge relief.

This is not to say, though, that Charlie is a “mechanical boy” as Bettelheim wrote of Joey, or that his mind functions more like a computer than like, well, those of his all too human parents. It is easier for Charlie to imitate the beeps and whirrs and clicks of my in-laws’ double garage doors because they are always the same. They are predictable, while who knows what will come out of our mouths.

We do tend to address Charlie in a rather scripted language of short, familiar phrases: “You did it! Great job. Good job. School tomorrow. Time for all done, all done now. You got it! Put coat on chair. Do you want barn plate or Blue plate? Shirt on! Hat on! Later.” In the past year, Charlie has often parroted these phrases back with a mischievous, mocking sparkle in his eye, as if to tease us about the “orders” we expect him to do: “Aw dunn way-ter. Aw-dunn Chaw-wee, aw dunn! Skool toomahroe. Skool toomohroe. Gate job oo diditt!” (So much for Theory of Mind, the theory that autistic individuals do not have empathy and cannot imagine what another person is thinking: Charlie knows when we are issuing orders and knows how to annoy by doing quite the opposite.)

The computer metaphor floated around the discussion in the Autism and Representation conference that Jim and I returned from today. It was a historical event, the first time that there has been such a discussion not only of “what autism is,” but of what autism means in and for our culture and society, and for how our culture and society conceives of and constructs autism. I do think that the “computer metaphor of the autistic mind” can be limiting and, indeed, misleading. Charlie is more likely to imitate the sounds of a mechanical toy (Alphabert) than Jim or me expatiating on the upcoming election for the next governor of New Jersey. But that does not mean that he would prefer to imitate such beeps and whirrs, or that he would prefer to be something mechanical. It is simply easier for Charlie to imitate a machine than a human being who is forever creating different sentences, new ideas, trying out new means of verbal expression.

Over-reliance on the computer metaphor of autism also leads us to assume that kids with autism would rather exist in the routine, predictable world of a machines. Charlie appreciates routine but that does not, I think, mean that he likes it. He knows that our family is “mommy daddy Cholly” but continually calls for visitors: “Gong Gong Po Po. Mike Wucy [his godparents]. Tara back. Sara. How back. Pah-trice. Gramma Granpa Aunty Joan Rocco doggy Portia doggy Miss Greene.” Hellos and good-byes are difficult for Charle, but that does not mean that we should avoid them. We rather need to teach him how to handle such transitions.

Jim and I drove up in the black car Sunday evening, after more than two days away in Cleveland for the conference. I glimpsed Charlie standing with my mom in the living room, and then Charlie running out as Jim and I walked out of the car. “Hey pal,” said Jim; Charlie ran to look in the back window of our stationwagon, to make sure the blue boogie board–a hopeful symbol of his yearning to be at the ocean–was still there, where he had put it. “Come on in, honey,” I said, and he ran in. Charlie was a serious gent all evening, all big brown eyes and (Jim swore) taller than ever (alas, he was to wear Jim’s old Pittsburgh Pirates jacket for his Halloween costume and Charlie barely fits it!).

My parents had taken Charlie to New York, rode the subway, gone to Central Park. He refused (in some loud form, I imagined) to let my dad carry down his and my mom’s suitcases. The five of us went out for a quick dinner, then went back to our house. Charlie was smiley and got his “hot showa,” then demanded (at the early hour of 9.15pm) “beddtime.” He pulled his mattress off the boxspring, ran downstairs, saw the suitcases, and started a loud cry-whine. My mom and dad said their good-byes and went off with Jim. I pulled up the blind on the window and Charlie watched the loading of the suitcases and the driving off of the black car and threw himself (he is one for melodrama) onto the couch.

“Mommy bedtime! Mommy stairs!”

“Do you want to go up-stairs?” I asked, sitting beside himself and placing one hand on the back of his big head.

“Beddtime. Yess.” Charlie did not budge.

“Do you want Mommy to carry you?”

“Yess.”

I got Charlie into a sitting position; he put his head onto my right shoulder as he always does when he’s really tired and groggy. I carried him, rather slowly, up the stairs, wrapped him in Daddy’s blue blanket, and said “good night.” “Mommy stairs,” said Charlie, and down I went.

The crying went on for no more than ten minutes. Jim came back, hastened up the stairs and then down. “He’s out,” he said, heading into the kitchen for the newspaper. “He sure has a deep emotional life.” And sure belies all those psychoanalytic theories—–

Of course Charlie loves, has feelings, feels pain and sorrow and suffers; feels joy and delight and gladness. The fallacy of the computer metaphor of the autistic mind is that it makes the autistic person “other,” different, more machine and less human like. Charlie is, as I have often thought and as another conference participant noted, “too human.” He feels just as much and more than the rest of us, and with a sensory system so often so in need of sensory stimulation and input that he was very happy tonight to wear a heavy fleece glove on his right hand: Something about the deep pressure of the glove and the fleece.

The computer metaphor of autism is a creation of us non-autistic persons’ attempts to understand autism. “What autism is” is not about computers, or machines. It is about Charlie, and kids like him, and autistic persons like him on the spectrum, and it is high time that we began to search and to create new metaphors, new ways of talking about autism. And the time to start is right now.

About the Author: Kristina Chew is a Classics professor at Saint Peter’s College in Jersey City, New Jersey; mother of a teenage son, Charlie, who’s on the moderate to severe end of the autism spectrum; a translator and teacher of Latin and ancient Greek; and a blogger, at My Son Has Autism/Autismland (2005-2008), Autism Vox (2006-08), and Change.org (2008-09). She is currently writing a book about her family’s life on the long road with Charlie and translating the work of two Roman poets, Catullus and Virgil. She also blogs about education, disability, and health policy at Care2.com.

What’s Wrong with the Computer Metaphor of Autism first appeared on her blog, We Go With Him, and is reprinted here by permission.

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Coping with Feelings

by Diane

I read something at Alienhippy’s Blog towards the end of December, when I was brand new to the blog world, that really stuck with me:

“I think that the lack of empathy thing is just a shut down mechanism of self protection because emotion is so intense …”  (You can find the rest of the post here: http://alienhippy.wordpress.com/2010/12/29/toys-and-empathy/.)

That was one of the first things I read that let me know I had come to the right place – someplace where another person had actually felt some of what I felt and understood.   Up until recently, that was a very rare experience for me.  I’ve had quite a few of these moments since then, and I am so grateful to have met so many wonderful new friends.

In my Figuring It Out post, I wrote about my difficulty in accepting negative feelings in my kids.  I had come to the conclusion that this had something to do with my feeling responsible for fixing things.  As the mom of a child on the spectrum, it always feels like I’m the one who has to handle a problem, because no one else seems to understand what to do. So I’m constantly on my guard for things that look like problems, and I’m anxious, because the truth is that I don’t always know what to do. I’m also afraid that if I don’t figure out what to do pretty quickly or if I get it wrong, the problem will get bigger, and everyone will suffer as a result. Seeing that typed out makes it seem like an awful lot to ask of myself. But it’s what I’ve been doing for all these years, and it gives me a sense of fulfillment to make such a meaningful difference in my child’s life. I just have to learn what is truly helpful and what is just stress.

I think there’s something else happening in the anxiety I experience over other people’s feelings, and over my kids’ feelings, in particular. All my life I’ve been overwhelmed by any strong emotions in myself or others. When my parents would argue, I’d shut down. When other girls picked on me, it was the same thing.  Instead of expressing or even just processing something, when it got to be too much, I turned it all off so that I could keep on functioning and doing what I needed to do.  It wasn’t that I didn’t feel anything. It was that I didn’t know how to respond or what to do about it, and I couldn’t tolerate that state of extreme anxiety for very long, so I found a way to make it stop altogether. The thing about stopping emotions is that you seem to have to stop all or none of them, so I ended up blocking a lot of good stuff, too. Thus began my ongoing relationship with depression.

My kids have plenty of their own difficult feelings, and each of them has a tendency to get overwhelmed pretty quickly. Simon has been diagnosed with an anxiety disorder, and I know Alvin well enough to know that he has a worse time with anxiety even than Simon. Little Theo is only seven, so it’s hard to know how much of his reaction to things is just because he’s so young.  What is hard for me to experience with all my kids is that they don’t seem to do this shutting down thing – at least not around me.  Each of them – even Simon now to a large extent – is holding it together through their school day and through some other activities.  Then they come home, and I get to enjoy the aftermath.  Being confronted with a bunch of unrestrained energy and emotion from three different individuals is just not something that I came equipped to handle.

I find myself a lot of the time either trying to fix what’s bothering my kids so they can be happy or brushing off their feelings in the hopes of not having to deal with them. I’m wondering if maybe my not wanting to be around their negative feelings is because I’m afraid of experiencing those feelings myself.  If I allow myself to feel what they are feeling along with them, I’m afraid I will be overwhelmed.  It makes me anxious when I am confronted with a stressful situation and I’m not already in an optimal state of mind, because then I don’t have access to my instincts, and my instincts are what I trust to help me make good decisions.

A while back I started reading a copy of How to Talk So Kids Will Listen and Listen So Kids Will Talk, and a great deal of it is about the healing effect of just letting your child express a feeling and letting them know that you hear what they are saying without trying to fix or judge anything.  This is completely counter-intuitive to me, because like the authors and much of their audience, I hadn’t experienced a lot of that myself growing up, and my own spectrum issues don’t make it any easier for me to pick these things up on my own. I’ve managed to try this approach on some occasions – acknowledging or reflecting back a child’s feelings without adding any emotional charge of my own to the situation – and the results are truly amazing, even with my spectrum son.  It turns out they do have the capacity to work some things out for themselves and even to calm themselves down, and when they still need some help, we’re all in a better state of mind to figure out what to do next.

I’m starting to see why this approach is so powerful, given the effect that blogging and exchanging ideas is having on me.  Having a place to express myself and a community of people who will respond with encouragement and understanding  allows me to release a lot of what’s bottled up inside and to relieve some of the pressure. It allows me to breathe and opens up a space where there’s room to care about others. Thank you all for that.

About the Author: Diane is a woman with Asperger’s Syndrome and the mother of three sons, one of whom is on the autism spectrum. This piece first appeared on her blog, Don’t Panic 2.0, and is reprinted here by permission.

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FYI: Autistic Women and Autistic Writers Exist, and They Might Even Be Modified by Adjectives Such As “Successful” Rather Than “Egocentric” or “Mindblind”

by Melanie Yergeau

“Melanie,” she writes, and I imagine her doing so in an armchair, a red velvet armchair, this woman enunciating each syllable of my name, if only to make sure I comprehend her—“I hope as we go forward, Melanie, I hope you come to understand that at many levels what does and does not apply to you”—I stop reading, grind my teeth, poke my tongue in a developing cavity, if only to make my wince more wince-worthy—and continue on with her letter. “It’s not meant to personally challenge you,” she blathers, “but are the observations and ways of those with very different life experiences. Other people have different life experiences than you, Melanie, but I understand how difficult it is for you to put yourself in others’ shoes.”

I stop reading. It is difficult for me to fit into others’ shoes. My feet are incredibly narrow size nines, and I often fall out of my shoes—my shoes. And then there was toddlerhood, me walking so feverishly and insistently on tiptoes, my mother recalls, that the doctors considered cerebral palsy! (with an exclamation point) and hurriedly put my legs in casts below the knees, then braces, only to find out that it wasn’t cerebral palsy, that it wasn’t a symptom of anything with a legally recognized name, at least not anything legally recognized in the U.S. until 1995, at least not a symptom of anything other than Melanie being Melanie and what the hell is wrong with Melanie? There are empaths, and then there are dis-empaths—and as a teenager I was pegged into that escapably inescapable designation, that of the autism spectrum disorder, the one that, if you believe the charities, creeps into your child’s room at night and steals her soul, steals her ability to walk flat-footed, steals her ability, as the blathering woman in the imaginary red velvet armchair put it, to recognize that “other people have different life experiences.”

So much of my childhood was a search for an explanation—a search carried out by my parents, pastors, teachers, counselors, and the elementary school kids who liked to beat me up at recess. One day it’s selective mutism, and the next day it’s all my mother’s fault. One day it’s “let’s get a CATSCAN and make sure she doesn’t have a brain tumor,” and the next day my guidance counselor asks if my father has ever touched me. (And me, being ever the literal-minded autistic, says “yes”—is it illegal for fathers to touch their kids?) Once the Asperger’s autism designation descended from the diagnostic heavens, my capacity to empathize was suddenly eaten up by malfunctioning neurons. My capacity to engage in social relations or maintain eye contact vaporized alongside my personality. My capacity to have capacity was called into question. All these discourses, all these incapacities. Discourse about autism, I think, is far more virulent than autism.

In fact, discourse about autism has reached critical mass. Media outlets harp about the so-called epidemic, likening autism to a fate worse than pediatric AIDS, cancer, and diabetes combined. As of this past week, the autism rate has changed from 1 out of 150 people to 1% of the total population—1 out of 91. Not only this, but autism is said to affect mostly boys, the new statistics reflecting an incidence of autism in 1 out of 58 boys. These days, when I read and hear the numbers, when freshmen at my university tell the campus newspaper that these numbers are “so alarming,” alarming enough for them to fear procreation—I think to Lennard Davis’ work on disability and normalcy, specifically, when he describes the entire field of statistics as eugenics. Davis notes, “Statistics is bound up with eugenics because the central insight of statistics is the idea that a population can be normed. An important consequence of the idea of the norm is that it divides the total population into standard and non-standard subpopulations. The next step in conceiving of the population as norm and non-norm is for the state to attempt to norm the nonstandard—the aim of eugenics” (6).

When I am a number—a gendered number at that, and I mean gendered number both literally and figuratively, because I’ve synaesthetically thought of numbers as being gendered since I was a kid—but… when I am a number, I’m a number to be avoided. A number meant to instill fear and alarm. A number meant to warn parents that I could happen to them. A number that signals the dissolution of marriages and other gratuitous disability-induced horrors. A number that borrows its soundtrack from that classic, repeated knife-stab move in slasher flicks. I can see and feel the numbers as eugenics—all too visually, all too tangibly.

But the fraughtness of autism discourse neither starts nor ends with numbers—it involves our very conceptions of autism and its overlaps with gender, involves that tired misconception of autism precluding empathy, emotion, and personhood. Kidnapper imagery abounds in PSAs and billboards; popular nonprofits mourn the loss of the children that never were. And as reprehensible as these mass-mediated representations are, perhaps more concerning to me (out of my own autism-induced self-centeredness?) (I pose that question snarkily) are the professional discourses that affect me, us, you, them—any and all of us who hold some connection to the amorphous numbers. For as much as we’d like to dismiss the autism-as-thief trope as the next of the myths du jour, such myths find their realities in the various professional discourses that surround autism and the numbers and the gender and empathy issues. In medical discourse, autism is disempathy. It is, as psychologist Simon Baron-Cohen notes, a case of the “extreme male brain” (3). According to Baron-Cohen, autistic people are logicians and systematizers—characteristics in supposed contrast to femininity and empathy and social skills. Autistic neurology is so phallic as to penetrate unsuspecting female minds and make male any and every idiosyncrasy. Scholars in the mood for retro-diagnosis take delight in postulating Emily Dickinson was autistic, or that idiosyncratic fictional characters such as Jane Eyre were autistic. While certainly the autism rate remains higher for boys at a 4 to 1 ratio, the key characteristic for all autistics, per Baron-Cohen, is neurological maleness—such that autistic girls and women become doubly disabled: first by a merciless soul-stealer, and then by a chronic gender-reassigner.

I think to all the ways in which I am distinctly feminine, or distinctly unfeminine—or, conversely, more than a matter of mere is, the ways in which my supposed unfemininity is constructed as such, is rendered a symptom of my supposedly more-male-than-female neurology. The letter from the imaginary-armchair woman—the letter where she claims that I lack understanding of experiences outside my own, of minds outside my own. Or the first time I went to a school dance, where I went up to the DJ and requested the Electric Light Orchestra, to which he replied that he didn’t have any Electric Light Orchestra; so then I began requesting bands who sounded like the Electric Light Orchestra, such as Kansas or the Moody Blues, or Jefferson Starship or Styx—and I kept reciting band after band after band until he yelled at me, over the sounds of 90s grunge, to get the hell out of his face. Or, at this dance, when I grew stiff to the touch, to any touch, and while my female classmates discussed boys and shampoo tips and kitten posters, I wanted to talk about how many top-40 songs ELO had in a four-year period, or recite the list of all of their songs in alphabetical order, or rehearse the band members’ birthdates.

But, as alien as I may seem to describe myself, as rhetorically unaware as my sixth-grade self may seem—I’d posit that the disempathy here, this rhetorical construction of the autist as disempath, is ableist. That is, any assumption about lack of audience awareness by default makes an ableist assumption about who an audience comprises—an audience filled with non-autistic people, or parents, or professionals, or statisticians? Are autistic people considered to lack such capacity that they cannot form and function as their own audience?

Perhaps my delving into rhetoric, writing, and the troubling of audience seems a stark shift in tone here. But as a writer and an autistic and a woman, it doesn’t seem this way to me. The transition seems so natural, not stark, and I’m not even sure that I need a transition, that I need to create some turn-around phrase or some three-point thesis statement that outlines the whole of what I’m saying, what I’m writing. And for this, a compositionist who likes all things neon and 80s might pull out her copy of Linda Flower and start droning on about reader-based prose and cognitive immaturity, what Ann Jurecic referred to as egocentricity in her 2007 article in College English, called “Neurodiversity.” Jurecic’s piece is what I’d label the trademark autism piece in the field of rhetoric and composition, at least, it’s certainly the most well-known, is one of the first if not the first, and it’s so normatively organized, with lots of transitions and other so-called readerly cues. As Ann Jurecic labels autistic writer and scientist Temple Grandin as mindblind, I can’t help but wonder about my own signposting or lack thereof in the essay I read now, how things make so much sense to me but may very well make no sense to you, as if my words here float and crumble, a style begging for an analogy to my strained ways of making and maintaining eye contact. I think to Jurecic’s comparison of Grandin’s edited and published book versus Grandin’s unpublished essays on her web site—a comparison Jurecic uses to argue that Grandin very much lacks audience awareness, that any semblance of organization is likely attributable to heavy editing on someone else’s part. Jurecic writes, “Grandin, of course, is not a college writer; she is a professor whose job requires her to write frequently and well. Her writing is ‘autistic’ in large part because, even after she has written six books and dozens of articles, she still cannot consistently define a line of argument, guide a reader from one point to the next, or supply background for references that will otherwise be unclear” (429).

I should here note that I haven’t hired anyone to do heavy editing on this essay—as much as I may have needed it. I haven’t run this essay by an advisor or committee member. I haven’t visited the writing center, nor have I discussed potential revision strategies with a disability services counselor. I’ve only shared it with the mirror, reading off words in my own eye contact-less, male-but-not-really-male-brained way.

What strikes me about Jurecic is her reliance on Baron-Cohen, who has also researched and written quite prolifically about autism and mindblindness—that is, the supposed inability to imagine the mental states of others. Despite autism’s postulated male, logical influence, she describes the essaying of autistic writers as having an “unfamiliar logic that is challenging to follow” (43). She also notes of autistic writers that, “Clearly, an inability or limited ability to theorize other minds, as with egocentrism or limited empathy, would make communication a challenge” (426). And here I stop and revisit an earlier point, perhaps in my own desperate attempt to mimic good essay conventions, perhaps in my own frenzied manner of transitioning from point A to point Q. Such a stance, that of grounding autistic ways of knowing and expressing in terms of unfamiliarity, inability, challenges, mindblindness, disempathy, limitations, and other items mired in deficit—such a stance leads me to think that some of these autism PSAs need to be revised, to inform parents that autism steals a person’s ability, as I here unfairly quote Jurecic, to “define a line of argument, guide a reader from one point to the next, or supply background for references that will otherwise be unclear” (430). It scares me that scholars and peers in my field have taken a Baron-Cohen turn. It scares me that my peers and professors and students might perceive my ways of knowing, being, and expressing as misfiring neurons, as disempathetic illogicalities. Such deficit-laden rhetoric makes little to no room for theories of neurological difference, makes no room for disability studies, where societal barriers are more disabling than any form of bodily difference.

As Susan Wendell writes, “We need a feminist theory of disability…Disability is not a biological given; like gender, it is socially constructed from a biological reality. Our culture idealizes the body and demands that we control it” (260). I need only think to Tony Atwood to see the relevance of Wendell and other disability theorists—not to mention feminist theorists—to grasp how unquestioned matters of biology go in matters of disability because, as Simi Linton notes, disability is so often conceived of as that “atypical experience of deficit and loss” (5). Attwood, arguably the most well-known Asperger’s specialist in the world, has recently taken to writing about the under-diagnosis of autism in girls and women. He describes such girls as being able to “pass” more fluidly in day-to-day life because they possess certain positive, womanly qualities—unlike the stereotyped representations of the screaming, aggressive autistic boy, autistic girls are more likely to be quiet and “passive” (3). Attwood also contends that neurologically typical girls are more likely to be “maternal” and take autistic girls under their wings and help with social skills (5).

What I find most pertinent about Attwood to this discussion, however, is his embrace of Baron-Cohen’s concept of the extreme male brain. While discussing how autistic individuals have obsessions, or what he terms “special interests,” Attwood maintains that most autistic girls have “typical” girl interests such as kittens or unicorns—but the unrelenting intensity and rigidity of their interests (that is, the detached and weirdly logical male expression of their interests) is what sets them apart (5). A “typical” girl submits her dolls to mock social situations such as dating or going to the mall. An autistic girl lines her dolls up in alphabetical order, or by height or type, and sits in her room for seven hours while observing the flaws and curves of Barbie’s plastic figure.

Where to go with all this—this assumption that autistic people are inherently lacking something, this assumption that autistic women are somehow less than women because of their neurological wiring, this assumption that autistic writers lack audience awareness, when, in reality, autistic people are excluded from most every audience one could even think of, so what practice would we have anyway in imagining the mental states of others when everyone else so wrongly presumes to know our own mental states?

I think to autistic writer Jane Meyerding, who identifies her autistic self as genderless. She writes, “My intellect makes me a feminist. But my gut, my feelings, my self-awareness remain stubbornly and radically un-gendered—at least in the terms of the culture that surrounds me” (157). And: “When people perceive me as aloof, they are sensing an absence of emotional availability. It’s unwomanly of me, in traditional terms, to be the way I am. In feminist terms, it’s un-sisterly. I just have to accept that, for this autistic, it’s normal” (169).

I’d like to think that feminist approaches to disability—that is, any approach that considers social and cultural constructions of difference, rather than neurological imperatives—would not render the autistic woman as un-sisterly or unwomanly. I’d like to think that I could call myself autistic and not be considered unempathetic or mindblind, as lacking in some core feminine trait (as if there exists a checklist of core feminine traits). I’d like not to get letters from mothers of autistic children that patronize me and my approach to the world, and I’d like not to think of such mothers as occupying red velvet armchairs, because the kitschy image of red velvet alone makes me want to gag. I’d like to think that autism organizations at my university and in my city wouldn’t present autistic individuals as lacking humanity, as having a condition that has taken something intrinsic away. I’d like to think that, as my title suggests, autistic women and autistic writers not only exist in space and time, but also exist in categories that are not centered around deficit, loss, and mystery.

About the Author: Melanie Yergeau is an autistic woman and an assistant professor of English at the University of Michigan, where her academic interests include rhetoric and composition, digital media, and disability studies. She currently serves on the board of the Autistic Self-Advocacy Network (ASAN).  She first read this piece at the Feminism(s) and Rhetoric(s) conference that took place at Michigan State in October of 2009. It later appeared on her blog, Aspie Rhetor, and is reprinted here by permission.

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Sometimes What Looks Like Empathy, Isn’t

by Lynne Soraya

Change isn’t easy for those of us on the spectrum. The beginning of a new school year is replete with it. Given this, it’s inevitable that students with Asperger’s would run into a few bumps along the way. Jeanne Holverstott recently wrote an interesting post about some of the challenges she’s experienced through the eyes of her clients, young men with AS.

In her post, Jeanne wrote about how subtleties such as perception and social position can create unexpected complications for those on the spectrum, ones that are not always easy to explain. When trying to make sense of “the rules” of social engagement – how do you deal with dynamics that disparately effect those with AS?

As diverse as those of us one the spectrum are, I’m often shocked by how specific commonalities can be. As I read Jeanne’s post, I was reminded of an incident in my life that was very similar to the ones she described. One in which language and perception, came together catastrophically during a particularly difficult time in my life.
Bully

As I’ve written about previously, fourth grade was particularly difficult for me. I was subjected to a level of bullyingI had never before experienced. It was calculated, coordinated, violent, and relentless – and took a terrible toll.

Long before the school year ended, my father began making preparations to get us out of there. When he was finally offered a job in a neighboring town, he wasted no time. He took it – happy to have removed me from an intolerable situation. But the true cost of the bullying and betrayal I’d experienced wouldn’t be truly evident until the new school year began.

My new teacher was very extroverted and people-centric – traits that would seem ideal in a teacher. But we quickly came to clash. In her estimation, being alone and isolated were the worst possible outcomes for anyone. I was both.

Not that I wanted to be…but I was coming from a completely different perspective. For me, isolation was a far less painful place than the world in which I had spent the previous year – a world in which it was impossible to tell the cruel from the kind, and being around people meant living in constant fear, wondering where and when the next attack would come. And my teacher unknowingly made it worse – in an attempt to integrate me into the social sphere of the classroom, she “assigned” me a friend.

It was a situation I’d been primed to fear. The worst bully in my previous school – the ringleader who led many of the attacks – had been a girl who’d been “assigned” to befriend me, in that case by her mother. She’d resented it, and made me pay for it, dearly. I now feared the same from this new girl.

Recess

I didn’t know how to articulate my feelings, or how to explain the dynamics that caused them, so I reacted the only way I knew how. I waited until I thought no-one was looking, and made a beeline to a remote corner of the playground. After the first recess, when my new friend came inside without me in tow, our teacher reprimanded her publicly. Now, the girl had definite motive to dislike me – I’d gotten her in trouble. Embarrassed at having caused this girl grief, I avoided her all the more.

Afraid and unsure what to do, I spend most days pacing the edges of the playground. I wanted friends, and social contact, but I had no idea how to successfully make it happen – I didn’t have the tools. I didn’t know how to identify what I needed, or ask for the help. So, I resigned myself to isolation.

My teacher became more and more troubled, and decided it was time for her to take action. During every recess, she would watch me like a hawk, alert to any sign of unsociability on my part. When she saw it, she’d intervene, and attempt to push me into some form of social activity.

I was non-compliant. Fear was a powerful motivator – and I found more and more ways to avoid her. It became an ongoing tug of war. The harder she pushed me to be social, the more my fears and anxieties grew – and the more I isolated myself.

As it escalated, so did my stress level. I came home more and more tense and exhausted. Seeing this, my father attempted to intervene. But no matter how he fought to explain my fears, he only encountered frustration. She just couldn’t, or wouldn’t, hear him – and the tug of war continued.

Serious Girl

For all my social isolation, I’d always excelled academically. In that I held myself to high standards, and so did my father. But as my stress level climbed, it began to show in my grades. One day, as I stared at a big red “C” scrawled across the top of my most recent test, I cracked.

All the stress and anxiety boiled over. I began to shake, and started to cry. My classmates were kind and concerned, and they asked me what was wrong. “I got a C.” I showed them the paper. “My father’s gonna kill me.” It was phrase I’d heard my peers casually use countless times to denote parental displeasure. When they used it, no one ever seemed to give it a second thought. When I used it, it backfired badly.

My father was on the receiving end of a panicked phone call. “Why would you say such a thing,” he burst out as we drove home. “You know I’d never hurt you!” I was surprised at the vehemence of his reaction, and confused. Why was everyone upset? Why were they taking me so literally? I wondered what he had been told – and how the meaning of my words had been twisted.

I can only imagine my father’s fear when he received this call – he understood all too clearly what an errant accusation could do. We’d been through it before. Was my poorly received attempt at peer-appropriate language going to result in another investigation? Would the family be further torn apart by outside suspicion?

Teacher

From the outside, looking in, people may have admired my teacher. “Look at how she cares,” I imagine them saying, “Look at how hard she tries to help that poor little girl!” But from the other side, it looked very different.

My experience in her classroom was one of the worst in my school career. I can’t tell you how many times I wished for a single word from her: “Why?” Her aims and my aims were the same – I wanted to be social as much as she wanted me to be. But I needed help that only understanding could provide. But I didn’t get that.

I didn’t have a diagnosis – so I can only guess what my teacher had labeled me in her mind. Abused? Disturbed? Regardless of what name she put on it – it was clear she saw me as “other.”

My best teachers did ask why. Better yet, they often read between the lines and came up with the answers themselves. It’s sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.

About the Author: Lynne Soraya is the nom de plume for a writer with Asperger’s Syndrome. This piece first appeared on her Psychology Today blog, Asperger’s Diary: Life through the lens of Asperger’s Syndrome, and is reprinted here by permission.

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Does Loss of Empathy Make You Autistic? The Internet-ASD Debacle

by Autism and Oughtisms

In an attempt to defend herself against growing outrage at her suggested link between autism and internet use, Baroness Susan Greenfield has stated the following:

“I have never claimed new technologies are causing autism. Rather, I’ve said that the increase in lack of empathy, that is documented scientifically, may be leading to behaviours like that and this should be explored.” (From the Daily Mail)

So, if I am reading that correctly, she is equating “an increase in lack of empathy” with autistic behaviours. (Do let me know if you read her statement differently, but the rest of this post takes her words as they are, and is based on her previous statement clearly linking the rise of autism with internet use.)

Autistic behaviours are those defined in the DSM-IV-TR, as qualitative impairment in social interactions, communication, and restricted or sterotyped patterns of behaviour. When you broaden autistic behaviours to include the other four pervasive developmental disorders that make up the autism spectrum (as it’s come to be known), you don’t need all three areas of impairment (sometimes two is enough, and Retts and CDD have somewhat different criteria). If any of those three areas of impairment include or suggest a “lack of empathy,” it would come under the head of “social interactions.” But empathy is not mentioned nor necessarily implied, in the description of those impairments.

Specifically, the mentioned social interaction problems are as follows: impairment in the use of non-verbal behaviours, failure to develop peer relationships appropriate to level of development, a lack of spontaneously seeking shared enjoyment, and a lack of social or emotional reciprocity. An autism diagnosis (though for not all conditions on the spectrum) requires only two of those social impairments to be present.

If someone with autism had every single one of those social impairment criteria (my son, for instance, had everything on that list when he was diagnosed), that would not mean they lacked empathy. It might mean they are very withdrawn, which is often the case. But having immense trouble interacting with and understanding other people, is not the same thing as lacking empathy. Indeed, there has been growing understanding that autistic people often suffer from too much awareness of others emotions and feel overwhelmed by facial expressions (again, my son has become such a person). Even if an autistic person cannot read another person’s body language and facial expressions, and struggles to understand what another person means, that is a very different claim from the idea that they don’t care what the other person feels and thinks.

Being able to understand what someone else feels and thinks and not caring about it, is something else entirely. A very nasty something else, and incidentally, the same something-else that is often linked to internet use; the trolling, cyber-bullying, griefing behaviours that concern parents and society more generally.

It has been argued that internet time – particularly the time spent on an internet by a  parent when the should be interacting with a child – can reduce a child’s ability to learn from and about body cues and facial expressions. But the internet time would have to be extraordinarily extreme to actually give rise to anything like autistic behaviours, and the child would have to be excluded from interactions with other human beings too, who would otherwise have passed along this non-verbal information. Furthermore, in addition to this extremely deprived situation, the child would have to somehow pick up repetitive / stereotyped behaviours, and have marked communication problems or abnormalities, for an actual diagnosis of autism.

The idea that abuse or neglect on this sort of scale, could lead to autism, is an old and fully debunked theory. There is no connection at all between parental abuse or neglect of a child, and a child getting autism. There are entire cultures that do what we in the West would consider extremely neglectful behaviour when bringing up their young children, and yet they do not have higher rates of autism (anyone not familiar with such cultures and the fact that there is no connection between abuse and autism, would be well recommended to read “Unstrange Minds” by Richard Grinker). Autism is, by definition, a pervasive developmental disorder; both those words – pervasive, and developmental – are essential to appreciating the nature of the condition.

What of the older age groups then – the teenagers who are face-down in the internet and technology, and thereby take on “autistic behaviours.” Considering that autism isn’t something you suddenly get as a teenager, this is a very misguided approach. Autism is present from very early on in life; usually evident before the third birthday, and often by 12 months old. Less severe forms of autism may go un-diagnosed until the teen (or even later) years, but there is no evidence linking such diagnoses with increased internet use. None. (If you know of some, do share, I’d be very interested to have a look.) Again, you would have to also account for such things as repetitive behaviours; even if internet use lead to lower social skills and communication skills, and even if we labeled this “empathy”, where did the autistic stereotyped behaviours come from?

But there’s a great big elephant in the room that I haven’t even pointed out yet.

It’s got a great big sign on it that points out that internet use has also been linked with higher levels of empathy and more real-world social interactions. So even if the internet was leading to lower levels of empathy that created more “autistic behaviours,” might it not – in the same breath and reasoning – be reversing autistic behaviours and tendencies? (Though I think the link to autism in either direction is weak and unconvincing.)

There are some things we do know about autism and internet use. We know that the internet allows autistic people to get jobs, make friends, get a sense of belonging and self-worth, that might not have otherwise been possible. If there is a link between autism and the internet, it would seem to be one that helps those who are already autistic, not turns non-autistic people into autistics. To demonize internet use, is to not helping autistic people, in fact it may harm them in some very real ways.

There is one way to perhaps save the statement linking lack of empathy to autistic behaviours, as arguably represented by the social impairment criteria for autism. Which is to say that the behaviours at issue are only the social impairment ones, not autism as a whole (this is definitely a way someone might read Greenfield’s statement). However, that makes the “autism” reference entirely redundant. Autism is not just social impairment, (even if social impairment there meant lack of empathy). If what she means is just social impairment, then she should say that. If what she means is just lack of empathy, then she should say that. Autism, on this reading, is in no way part of the picture, and is a meaningless tag-on word serving no obvious nor helpful function.

In the meantime, the damage to understanding autism, its behaviours, and its causes, is already done. Headings like those at the top of the story by the Guardian on this matter, “Research linking autism to internet use is criticised,” makes it all the harder, since there is no such research (and in the piece itself they don’t even suggest or refer to any such research; it is just a bad header). And just when I thought the story was bad enough, she had to throw in that suggested link to empathy, which is a widely-spread misunderstanding about autism already, and which particularly damages the public’s willingness to interact with, and themselves empathise with, people on the autism spectrum.

Autistic people are not unfeeling, uncaring monsters. Struggling with non-verbal and verbal language, doesn’t make you a sociopath nor a psychopath. Lack of empathy is not part of the definition or description of autism. Suggesting it is, is not only wrong, it is harmful.

About the Author: Autism and Oughtisms is the mother of two sons, a five-year-old and a one-year-old. Her elder son has classic autism. This piece first appeared on her blog, Autism & Oughtisms, and is reprinted here by permission.

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