I’ve been spending the weekend putting together my preliminary research questions and a working bibliography for my graduate program. To my great surprise, I’ve actually been able to read some of the blazingly unempathetic papers about our supposed lack of empathy without spluttering in a fit of moral outrage every five minutes. I call that progress. In fact, I read several articles and found myself able to critique the problems in them rather effortlessly. I credit this development to two things: a) the critical theory I’ve been reading, which helps me to see the larger issues of power and privilege that weave themselves throughout the literature and b) my support network of over 40 people I can call on when the going gets tough.
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
Probably the worst thing for me reading about this, is that these theories mirror my worst fears about myself, or possibly my worst fears about what others think and feel about me. I’ve spent so long, a lifetime, trying to figure out other people, regular people, that I sometimes have trouble separating their unrealistic expectations of me from my own.
Uta Frith, thanks for helping me feel even worse about myself.
No kidding. And I know that I’ve been hopelessly self-involved at times (though, what kid isn’t?). But the worst part is our culture’s allergy to honesty. Does anyone, ever, tell me how they see me, or how I’m bothering them? Usually not until we’re way past the point of possible repair. So I’m stuck with my own flawed, paranoid and/or oblivious interpretations of how other people see me to gauge myself by. Which too often feeds into my shyness and paralyzes me into inaction.
Some days I wonder how I’ve managed to make it this far.
Holy crap, yes.
It’s not like I expect everybody to stop being dishonest overnight, and I can’t really change my entire culture. But seriously, I feel like I have so little to work with, in terms of up-front-ness. Most regular people need to get all riled up by the time they say something, about ANYthing, and like you say, by that time, they already think I’m a jerk, and not interested in anything I might say anyway. sigh. I don’t like feeling paranoid, but I understand why.
Does anyone, ever, tell me how they see me, or how I’m bothering them? Usually not until we’re way past the point of possible repair.
That’s my biggest problem with dealing with people.
Isn’t the dishonesty and immaturity of not explaining your feelings to someone who isn’t picking up the cues a somewhat vexing ethical problem? Doesn’t it show a rather serious lack of empathy toward the person who can’t visually process what’s going on? It certainly seems so to me.
Not picking up cues isn’t even an ethical problem. Getting upset at an aspie for not picking up social cues is like getting upset I’m reminded of an old joke about a man who prayed every day of his life to win the lottery. He lived his life well, attended church every week, yet he never won. Finally, we he gets to heaven he asks God, “I prayed my whole life to win the lottery. Why was my prayer never answered?”
God replies, “You never bought a ticket.”
People frequently complain about problems without trying to fix them. If you’re not going to tell me to my face that I’m bothering you, then deal, because there isn’t a thing I can do about it until I know there’s a problem!
Hi Jayn, you’re absolutely right that an inability to pick up nonverbal cues is not an ethical problem. I didn’t mean to imply otherwise, and I’ve edited my previous comment to be more clear. Thanks for pointing out the unintended implication, which is not one I support in any way, shape, or form.
Would the hackneyed metaphor of an “ivory tower” describe her workplace? I would think that she [Uta Frith] would be sensitive to that accusation. I would be. Without knowing much about her, her exposures to autism seems to be strictly college settings.
Both her colleagues and encounters with people with ASDs seem overly-narrowly focused to the academic/experimental. I think you have already pointed out that these tests given to people with ASDs change the test-subjects in amounts and ways possibly unique to people with ASDs. In addition, is she in league with SBC? They both seem to have the same attitude toward their test-subjects.
If she wants to make any breakthroughs in understanding autism she needs to approach it from every angle. This includes from the angle of people like you, Rachel Cohen-Rottenberg.
Uta Frith was Simon Baron-Cohen’s PhD advisor, but they no longer work together. In fact, she’s been very critical of his work of late and has taken him to task for crafting the theory that autistics are extreme systemizers in the absence of sufficiently rigorous methodologies:
http://www.nature.com/news/2011/111102/full/479025a.html
She still seems keen on the whole deficient-theory-of-mind model, however.
I note that she wrote: “These works suggest that self-knowledge and sharing of knowledge with others was poor in childhood.” (Frith 683)
Yet, apparently, she made no attempt to interview the authors to try and determine the truth of what they wrote.
So she is forming an opinion on what she has heard, sounds like the more of the Emperor’s New Clothes to me! Elaborating on the Pet theory.
I love reading what you write, Rachel, as you are able to interpret what you read and elucidate undercurrents that I would not see. Excellent work!
What a wealth of material you are finding! Can’t wait to read the final work.
Having gone through graduate school myself, I kept noticing that most academic “researchers” spent most of their time quoting each other. They seldom seemed to bother with things like doing original research or creating original theories. If they did do anything original, it was only to try to find items to keep the praise circle of academics going.
You found a ridiculous and insulting theory that keeps perpetuating itself while masquerading as research. Not only can these things go on for years, but I know of at least one that has gone on unchallenged for at least two centuries.
What was even worse was when I proposed doing actual research or working out new theories, I got uncomprehending stares if not outright hostility. They seemed afraid that I might upset the apple cart. Even stranger, none of these people were mean spirited or cruel, just stuck in the status quo.
This all seems to highlight a weakness of neuro-typical thinking: It is better to say the things that get you accepted than to risk figuring out the truth.
I’m with you, Rachel, I really am, but all those quotes you gave are true of some of us. They describe exactly at least a dozen characters I’ve “met” and argued with online on Yahoo Lists and several forums. (No, I won’t use the Latin plural of that word.) I can recall most of their names, but I’m sure it would be a bad idea to list them here. The very things that they all shared, (and pissed me off most), was that they were full of themselves, condescending, wouldn’t listen to others, and were always positive that they were right. They were hateful, hurtful, and caused good people to leave those Lists, because they really were that insufferable.
It may be there’s a tendency towards egocentricity in ASDs, or maybe these folks have a bit of BPD mixed in, I don’t know. I can say that I’ve known at least a dozen Aspie guys who fit that stereotype to a “T”. So while there’s some basis for these researchers’ viewpoint, they shouldn’t conclude that we are all that way.
(Write me if you want their names.)
Clay, yes, some people with Asperger’s are egocentric. And lots of “normal” people are, too. I’ve lost count of the number of times my husband and I have stood in the grocery store, listening to people go on and on about their lives and their problems, without ever being asked about our lives and our problems. He and I have talked about it often — that feeling that surely, at some point, the person will ask after us and leave room for us in the conversation. But the social reciprocity simply isn’t there, despite our efforts to share conversational space.
I’m not arguing that none of us are egocentric. I’m arguing against the contructing Asperger’s as defined by egocentricity. To tar and feather all people with Asperger’s because some are egocentric is analogous to tarring and feathering all African-Americans as criminals because some of them end up in jail. It’s simply unjust.
” I’m arguing against the constructing Asperger’s as defined by egocentricity.”
Thank you for putting it like that. I was distressed because I read through the paper, and saw so much of myself in there, and some things I didn’t think I was, but couldn’t refute.
I think of when I forget to ask people how they’re doing (happens all the time), or
ask questions about what they do, and when I realize that I’ve forgotten, I’m absolutely mortified. When I was younger, I would even call people to apologize, so they would think better of me. I’m not saying that everybody should be happy that I’m not reciprocal, but that there might be other reasons why other than I’m narcissistic and egocentric.
Meeting an egocentric person who thinks little of others means ONLY one thing – you met an egocentric person who thinks little of others.
These qualities are not necessarily common to Aspergers or Autism.
Honestly, I am learning more about Autism from looking back on my undiagnosed 38 years with Aspergers, more than I am learning from the “research,” which is clearly inadequate and biased.
I NEVER thought of Aspergers in myself specifically because of my surface knowledge of these misinterpretations. After meeting a young family member with PDD-NOS, I was struck by how empathetic and friendly she was, when I had always pictured Autistic children as uninvolved or uninterested in others.
I scored a 68/69 on Simon Baron Cohens test – Extreme Empathy AND Systemizing. My dad is an Aspie who could be perceived one of the steroetypes above but he is actually an extremely sensitive adult who has trouble with change, is VERY literal and likes to be alone. He is not egocentric and is very caring, though he has trouble showing it. Same goes for a dear friend who has Aspergers: Sensitive, empathic, and the most trouble comes from dealing with intolerant, insensitive people.
Thank you for continuing to shed light on a very misunderstood subject.
Lori Petro
TEACH through Love
Parent Education & Child Advocacy
Thank you, thank you for this post!
I remember first encountering that Frith essay while reading for my candidacy exams. The only word I could utter at the time was UGH. (an all-caps kind of ugh) Your analysis is far more eloquent!
Her statements about autistic autobiography outrage me. It’s also an unfortunately pervasive belief in my field (rhetoric and composition) — this whole “autistic narratives are unreliable and suspect because they don’t tell us what we want to know/hear/believe” motif.
At conferences, when I’ve said things like “autistic people often write to and for autistic people”… the heads of some academics explode (metaphorically speaking). Because if autistic people can write to and for autistic people, none of those people [neither the writers nor the audience] must be really, truly autistic. (groan)
I can understand the moral outrage. I guess if I spent a large portion of my time reading papers like that I would get more upset about it as well. For now though, I just can’t get that upset about it. Maybe I should be upset by things like that.
I remember well the pretty much constant accusation of being “selfish” from my childhood…and well, yeah, being in a fight for your psychic survival probably does tend to make one behave “selfishly.” Imagine.
Unfortunately, I encountered face to face Frith’s view of autistic people from a family member over the holidays: if your account of life as an autistic person doesn’t match up with my prejudices of what I see in front of me, then you can’t be really autistic.
Happily, on the other hand, you’re right that it’s so good to have an online support network.
I’ve felt guilty that I’ve been sort of relying on Rachel to read through papers and information like Frith’s. So, early this morning, while up with an upset stomach, I read the paper. Despite being armed with Rachel’s well reasoned arguments, I was very upset, and ended having a mini meltdown later on. Still nursing my headache.
I wish I could dismiss this prejudice as easily as others here, but I suppose this i why I read the research so carefully. I feel I need to consider the possibility that some of what Frith says is true, only because of how self-serving it feels to not consider things if they make me uncomfortable or make me look at myself critically. Unfortunately, I need to work on my discernment when it comes to the current state of autism research.
I will try in the future to be as brave as you all, and build up some sort of partial immunity to these sorts of things. I think that Rachel is doing important work, there seem to be so few doing it.
Ouch! I was all ready to say.. “oh yes, that was in the dark ages of medicine and it’s just like the days when colonialists saw nothing wrong with removing indigenous tribes from land they wanted for themselves”.
Then I remembered the date…
It’s hard to believe that this was written in 2004. I thought the study of aspergers was more advanced than that.
It’s all about tenure, and tenure is about publishing. Once you go against received wisdom, it’s hard to get into peer reviewed journals. The human consequences don’t matter.
When I read assertions like the ones by the researcher, I’m reminded of a certain xkcd comic.
Just replace the word, “girls” with “autistics” and you’ll see what I mean….
http://xkcd.com/385/
Exactly! (but you also have to replace the word “math” by “empathy”… or “theory of mind” or whatever of that kind.) But yeah, it’s exactly that!
“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.”
You must excuse me for not wanting to be social with you, or for a lack of empathy. Rest assured that it is NOT egocentric. Rather, it is because I really don’t care about YOUR life/work/opinions/B*ll Sh*t. I have better things to do than play NT games…
I wonder about being labelled egocentric.
For I do have a very well developed sense of myself (or should that be ‘self’?) and how I perceive the world. But then, like most of us I have had to. To learn how to interact with a strange world has taken years of continuous effort.
All very Egocentric, maybe.
However that has not made me think, in any way, that my view of the world is the right one nor that it is any better than anyone else’s view. It may be that it is no more than the right for me.
I am very open to others, to learn about others, to see different ways and different points of view.
But is anyone more egocentric than those ‘researchers’ who know that they are right and that everyone else is wrong?
[...] Saving a Theory, Dismissing its Subjects appears here by permission. [...]
OH THIS TROPE.
“Auties are too concerned with themselves, have no sense of awareness with others blah blah, not human, blah blah, selfish blah blah”
Would it occur to Frith that most of the human race is self-absorbed and egocentric? This is not just an “autie” thing. Dear god just look at my ex husband….
How thoroughly depressing. Progress nil.
another thought buried in the article is that Firth’s idea for workplace accommodation for autists is a “niche”. Excuse me for saying it this way, but another word for a niche is a ghetto.
Why is it that one ideal for disabled children in education is to mainstream them but for adults the ideal proposed by Firth is segregation? There are articles detailing the bad effects of sidelining disabled children in separate schools. (I think separate schools may be an option for some children… but not a goal as an educational policy).
I live alone, and outside of work I do my own thing, on my own 99% of the time.
I could be seen as selfish and egocentric.
In fact I find people in general so terrifying I prefer to only meet them in structured environments where I know what my role is. Outside of that I focus on my own ‘selfish’ routine and my own ‘selfish’ interests. It’s safer that way.
UGH, Frith looks like she’s channeling Freud and his notion that introversion is egocentrism.