It’s complicated, and hard to understand if you’re not part of it

by Ingrid Robeyns on April 1, 2014

April 2nd is World Autism Awareness Day, a day when we are called upon to raise awareness of autism. I have been working in the last months on a paper on how to [philosophically] conceptualize the well-being of people with autism/autistic people*, but alas, that project is not finished yet. But if you’re interested in new philosophical work on autism, check out this book that Jami L. Anderson and Simon Cushing edited, which contains some interesting chapters. And check out this interesting blog post by Richard Ashcroft, on a workshop that Raffaele Rodogno organized last year, which was absolutely fascinating for the reasons that Richard spells out.

I want to raise two issues: one about the diversity of people with autism, and the possible epistemological consequences.

Many people believe that autism is a disability that is somewhat ‘homogenous’. They have seen Rain Men or have friend who has a friend who has a child with autism, and then extrapolate from that to the general category ‘autistic people’. They have a colleague with Asperger’s and therefore assume that Asperger’s is always a mild form of autism. Or they belief that people with autism are less emotionally sensitive, or less interested in interacting with others, or less interested in having friends.

All of these assumption are wrong.

The problem behind these views is the denial of the fact that if one knows one person with autism, one knows one person with autism. People with autism differ dramatically.

Even for us, neurotypical people who share their lives with autistic people (or those of us who have some mild autistic traits and hence are seen as part of the broader autism phenotype), it is often surprising how heterogenous autistic people are. This struck me last Summer when I volunteered a day at my son’s school (which is a special needs school for autistic children). That day, I saw and interacted with all the children, and was struck by how different they are in how they interacted and behaved. I discussed this with some other parents who volunteered and they agreed.

So surely it must be even harder for the neurotypicals who don’t share their lives with autistic people to grasp the heterogenous nature of autism. There are a few famous autistic people out there – whether fictious (like Rain man) or real (like Temple Grandin), and they have a disproportionate effect on how we perceive and conceive autism. Yet as Cynthia Kim writes in this brilliant post, “autistic people are as varied as typical people”. They are not [all] going to grow up to become Temple Grandin II.

Now this brings me to the epistemological question. Why is it so hard for most neurotypical people to understand the genuine nature of autism, and not get stuck in stereotypes and simplistic views? Why is it so hard for neurotypical people to see the complexities?

An uncharitable (but therefore not necessarily untrue) explanation could be that they are not interested. There is only so much time in a day, and there are many disabilities, disorders, illnesses, conditions, cultural and social differences, religious diversity, etc – that it’s unsurprising that we tend to know more about those dimensions of human diversity that are relevant for us or those present closely around us. Yet the complexity in the case of autism may be deeper, and therefore also of special interest to philosophers working on situated epistemology or standpoint theory.

My hypothesis is this: first, we are still to a large extent in the darks about what autism exactly is. We are not even sure whether all those we currently label ‘autistic’ should be grouped together, or whether the most sensible classification would be very different.** Second, even if we stick to current diagnostic criteria, they are always formulated at high levels of abstraction and a person with autism does not need to display all of these features in order to have autism. So, for example, my son really likes to interact with people, and doesn’t like to be on his own – a feature that doesn’t fit with the views about autism most people hold. Third, in order to understand people with autism, one needs to have the right attitudes (such as practicing hard in listening and observing, trying to be non-judgmental, not reasoning based on neurotypical standards,… ). Yet in addition one also has to be able to see how the abstract characteristic of autism translate, in radically different ways, at the concrete level of behavior, needs, experiences, and so forth.

And here’s the crux: I don’t think one can learn this from the books. Books help, but one needs narratives and experiences. One needs to be part of it.

So what to do if you are a neurotypical person who isn’t professionally working with people with autism, or who doesn’t share your life with an autistic person? There are interesting blogs, such as Musings of an Aspie, or autobiographical accounts, such as Aquamarine Blue 5, or The Reason I Jump. These could work as a starter.

I seem to be somehow be repeating what I wrote here last year – only that my experiences in the last 12 months have strengthened my belief in the conclusions: it’s really hard to understand autism if you are not part of it. There are ways to become part of it, but they all give partial and limited epistemological access. So anyone serious about understanding autism is facing a steep hill ahead of them. But that should not deter you from not giving it a try.

– – – – –
  • The Dutch autistic community, as I know it, prefers the term ‘people with autism’ over ‘autistic people’ to signify that autism is not the uniquely defining characteristic of those people; they find ‘autistic people’ too essentialising. Yet I have heard other autistic people arguing that it is a matter of reducing stigma to use the term ‘autistic person’, since it should not be seen as a disability, but rather as a matter of (neuro-)diversity. In this view, calling oneself ‘an autistic person’ is seen as a matter of accepting who one is, and hence as part of what one could describe as a societal/political strengthening of the position of autistic persons. In my view both arguments have some plausibility, and hence I am using both terms interchangeably.

**At the level of behaviour, there are also striking similarities between some behavior or character traits that are characterizing some autistic people and some people with ADHD; and I recently read unpublished work by a doctoral student on dyslexia which struck me as strikingly similar too. So who knows whether 100 years from now we will classify this all very differently.

{ 40 comments }

1

Vance Maverick 04.01.14 at 12:13 pm

How is this different from any other category of people of whom it’s possible to be somewhat ignorant, like a specific minority? Serious question. It’s a limitation of the human mind, to generalize erratically from salient unrepresentative samples.

2

Wendy 04.01.14 at 12:32 pm

I’ve been working on (by which I mean, thinking about it, not actually doing any sort of verifiable research or analysis) a theory that autism is a lens of sorts, so you have to combine the lens of autism with the individual’s personality, and that’s why autism looks so different. My son has a personality that is independent of his autism, but the expression of his personality is filtered/perceived through the lens.

3

Ingrid Robeyns 04.01.14 at 1:11 pm

Vance Maverick @ 1: Interesting question. I think the answer is roughly this: the autistic brain works differently than the brain of a neurotypical. Sensory input is experienced and processed differently, hence autistic people perceive the world differently, and these different perceptions lead to different needs, behavior and understandings. I think this is a much more profound way of seeing the world differently than in the case of minorities, though there may be some (cultural or religious) minorities with such a ‘radically different’ worldview, that it would equally require living with them for an extensive period to understand them (that’s I suppose what anthropologists would claim, and in the case of communities very different of our own, this may well be true). The trouble with autism is that we are easily misled in thinking we know what autism is (since most people with autism don’t look very different from neurotypicals) and then neurotypicals interpret their behavior, needs and views by neurotypical standards. I guess that’s much less likely to happen in case of a cultural minority where everything (living arrangements, dress, language, customs, etc) signify the different way of looking at the world.

4

Vance Maverick 04.01.14 at 1:25 pm

Thanks. We’re hardly disagreeing, except that I’m from Missouri on the claim that people with autism are “different” in a different way. Maybe it’s true, but I’d be interested to read some substantiation.

5

Main Street Muse 04.01.14 at 1:31 pm

I do not have personal experience with autism. But I look at the recent CDC news on how 1 in 68 children is on the autism spectrum – a 30% increase from two years ago, when it was 1 in 88 – and I wonder what the hell is going on.

“Experts” say that this is due to a reclassification that includes more people – have they reclassified what autism is in the last two years? Are we turning “quirky” but functional people in to people with a disability? What has happened with our culture and our educational system that so many students require special needs assistance in the form of IEPs, 504 plans and meds? Has there been an increase in the percentage of children with severe autism? If we don’t know the answer to that question, WHY don’t we know the answer to that question?

Ingrid how old is your son? You sound like my neighbor, whose daughter, now an adult, has Down Syndrome. Her child took her into a world she did not expect to inhabit – and she, like you with your experience with autism, learned that the Down Syndrome community is not homogenous – there are as many variations of Down Syndrome as there are people with Down Syndrome. She received solace from an unlikely source – George Will, who wrote a column about his son Jon, who has Down Syndrome. It was a lovely column about his son’s aptitudes, written when his son turned 21: http://bit.ly/1mvuV0Y

Contrast that to the experience Arthur Miller had with his son, who also had Down Syndrome – Arthur Miller institutionalized his son shortly after he was born and no one really knew about him until after Miller’s death. Miller’s son was born in 1966; George Will’s son was born in 1972 – George Will attributes his son’s success in part to the transformations in how we approached people who were mentally retarded:

“And just in Jon’s generation much has been learned about unlocking the hitherto unimagined potential of the retarded. This begins with early intervention in the form of infant stimulation. Jon began going off to school when he was three months old.”

I will never truly understand my neighbor’s experience with Down Syndrome. But I’ve been moved by listening to her talk about – it’s changed my perception of Down Syndrome in ways that reading a book never could.

Autism – to me, an outsider – is something we know so little about. What is reported on are the huge jumps in numbers of those with autism. But other than that, very little is discussed. The blogs you note are a huge first step in developing an understanding of this condition.

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Ingrid Robeyns 04.01.14 at 1:41 pm

Vance Maverick @4: I do believe that there are other conditions/groups in the category “really complicated and hard to understand if you’re not part of it”. Perhaps Down is in the same category too, as Main Muse Street’s account @5 may suggest. I absolutely don’t want to turn this into a competition of sorts, and also don’t think such a competition would be very constructive! Still, I do think there are degrees and degrees. I think there are plenty of things we cannot really understand without experience or something that comes close to experience, but I also think that the epistemological difficulties are not always the same. And autism seems to me one of the more challenging conditions to understand for an outsider. I don’t want to make my claim stronger than that – so in short: yes, I don’t think we disagree.

7

Mr Punch 04.01.14 at 1:45 pm

Isn’t the concept of “the spectrum” itself part of the problem – reductionist in depicting a complex reality as a linear gradation?

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Ingrid Robeyns 04.01.14 at 2:58 pm

Mr Punch: yes, that’s a very good point. I have read somewhere (but unfortunately do not recall where but it’s not my idea), that the best way to represent autism is as a puzzle with 100 pieces. Each piece represents a trait in our personality, or a skill, or a talent, or an impairment. All of us have a few of those puzzle pieces (e.g. many people can become very focussed on one specific thing, but that doesn’t make them autistic). People who have autistic traits (the phenotypes), have more pieces, say 30. People with autism have yet more, say at least 50, but they also need to have a few key ones (sensory sensitivities may be a some of those). But they can have more or less pieces (60, 77, 89 or some other number) and also the mix of pieces can be different.

I like this metaphor much more than the ‘spectrum’. I think the spectrum may also be responsible for the view that classical autism is considered always a more type of autism which would have more disabling consequences than Asperger’s, which to the best of my knowledge is not true.

9

Chatham 04.01.14 at 3:09 pm

And autism seems to me one of the more challenging conditions to understand for an outsider.

That seems to be the case for many atypical brain situations, in my experience. Particularly those with less visible conditions, where others will often assume that an individual’s mind is working more or less like their’s (and of course, when we talk about understanding we aren’t talking about one thing).

As you say, this isn’t a competition, but it is a useful reminder that the people we deal with on a daily basis aren’t ourselves.

10

Philip 04.01.14 at 6:34 pm

The pieces of a puzzle metaphor definitely helped me conceptualize autism, in comparison to autism as a spectrum. I came across it first on CT and I think it was a Michael Berube post. Even though I had known some people with autism, and people who worked with autistic people, and although I knew it wasn’t right I still vaguely thought of Asperger’s at the mild end of the spectrum and Rain Man somewhere in the middle.

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Ingrid Robeyns 04.01.14 at 7:03 pm

Philip: I mentioned the puzzle metaphor here 4 years ago (see http://crookedtimber.org/2010/04/09/speaking-about-autism). I’d be interested to hear whether Michael has also written on this metaphor! I actually vaguely recall I have read it in a book written in Dutch. But the problem is that I have read quite a number of books in Dutch on autism, and that I no longer recall which one… but perhaps this is a good occasion to solve this issue – let me try tomorrow or on Friday to have a look at all those books and see whether I can locate the source. It would be good to give credit to the author, if I can trace him/her.

12

Philip 04.01.14 at 7:46 pm

Ingrid it could well have been your post that introduced the metaphor to me, it was definitely this blog. It could have been a comment in one of Michael’s threads for some reason I link it to him in my mind but that could be just be because of his posts about Jamie and the heterogeneity of people with Down’s syndrome.

13

john in california 04.01.14 at 7:51 pm

“My son has a personality that is independent of his autism, but the expression of his personality is filtered/perceived through the lens.”
Wendy at 2

That is the key. For me, the most important contribution Goodall has made is showing the range of personality within a mammalian social community. Since then, the study of other, less ‘human’ animal communities has shown similar diversity. As anyone who has owned several, or even more than several in my case, cats or dogs will tell you – they all have distinct personalities that can’t be trained away, only diverted or, perilously, suppressed. personality is much deeper in the mammalian psyche the cognitive function. Cognivity, if I may coin a phrase, is in some sense part of the environment that personality must penetrate to express itself. This variation in personality is one of the great keys to mammalian evolutionary success.
I don’t know if, say after the age of two or so, a person can be ‘made’ any smarter – more knowledgeable obviously, but not really smarter, however personality may grow and, in those who are willing to be reflective, eventually see itself. This is wisdom and it doesn’t require great to intellect to achieve.
I remember one of Goddall’s tv shows where one of her favorites, one she had known and recorded since infancy but now an old male, once a troop leader that now had been hounded and beaten by younger rivals and lay dying under the trees. Jane sat with him so he wouldn’t be alone and to keep him for as long as she could. And as he lay on his back looking up at the sun light filtered through the green, you could see in his eyes both the awareness of what was happening and the questions that must have puzzled him since babyhood, “Who is she?” “Why?” and maybe “Is this all there is?”
If he had been able to answer those question it may have altered the expression of his personality, but not the motivation of it, that is more fundamental. “Feeling and desire are the motive forces behind all human endeavor and human creation,” Einstein said that – yes, and animal, too. And Personality is the form that feelings and desire take. Or to repeat Wendy,

“My son has a personality that is independent of his autism, but the expression of his personality is filtered/perceived through the lens.”

14

ChrisB 04.02.14 at 12:34 am

I appreciate that “the population with a diagnosis of autism” is diverse, but I can’t see that the present article gets us much further, accepting as it does that there is a single condition that is autism.
Given, as we appear to agree, that there is little necessarily in common between the people who have the diagnosis, the most probable explanations would seem to be that the name covers several conditions with overlapping symptoms or that the definition is terminally vague and just consists of the constituent elements of human behavior prefaced by the words “too much” or “too little”.
It’s certainly true that in the US at least the DSM-IV definition makes diversity inevitable, involving as it does a Chinese menu approach to diagnosis – “(I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)” – which leads by perms and combs to thousands of different presentations. This diagnostic approach would tend to lead to the conditions-with-overlapping-symptoms problem; the vaguer DSM-V approach approaches the second “too much of things” problem.
At the very least, talk about ‘the autisms'; ideally, drop the term altogether and talk in terms of actual describable problems of communication, behavior, and the like. ‘Autism’ is incurable; problems with communication suggest trials of AAC.

Incidentally, do American Chinese restaurants still have menus like that? I’ve never seen one in my visits.

15

maidhc 04.02.14 at 12:44 am

ChrisB: Some Chinese restaurants have that as part of their “family special” deal for 4, 6, or 8 people, but it’s less common these days. I think it goes back to the days when Americans didn’t know about Chinese food and were afraid they might order it wrong. It’s usually in the front or back of the menu if it’s there at all.

16

Timothy 04.02.14 at 5:14 am

Mr Punch @ 7: Many phenomena are very highly or infinitely dimensional, but people have a very unfortunate tendency to see things as binary or one-dimensional. The whole recommendations aspect of Netflix, that they make bank with and awarded a million dollar prize for an improvement on, is based on operating in a highly dimensional abstract space of movies. I actually think the political and social situation would be much improved if we could somehow magically teach everyone a decent amount of linear algebra.

17

bad Jim 04.02.14 at 6:47 am

The puzzle metaphor is perhaps broadly applicable. We often characterize human behavior in terms of a spectrum or a continuum, perhaps because a linear approximation is conceptually convenient, but in some cases, like autism and perhaps sexuality, a one-dimensional approach is insupportable.

(On the other hand, there are circumstances in which the observables are discrete but a linear description may be useful. I think I can explain the events of my mother’s decline due to Alzheimer’s in linear fashion. As her memory declined, she lost one skill after another, as though she were a computer whose chips failed: this application requires this much RAM. First she failed to pass a written driving test, then couldn’t figure out a phone, and finally could no longer play the piano.)

The “person-first” distinction (“people with autism”, rather than “autistic people”) is something I’ve only recently encountered (yes, I haven’t been paying attention) and, whatever its other merits, seems desirable as a way to emphasize what we share. “Homeless people” obscures the difference between “people crashing on someone else’s couch” or “living in their cars” and “people wandering the streets talking to themselves”. These are not all the same thing.

Here’s a long read about coming out with mental illness. The point is that we know people who are gay, or people who struggle with illnesses, and we don’t always sort them into such categories. Of course anyone who encounters me will note my white beard and think “old man”, and I present myself to some degree as upper-middle-class, so no one is going to mistake me for a pelican.

18

Kiwanda 04.02.14 at 2:02 pm

autism and perhaps sexuality, a one-dimensional approach is insupportable

Sexual identity, intelligence, athletic ability, political views, privilege, race, religion: many things have some rough linear ordering, or clustering, and holding to these structural characterizations too tightly, or denying them entirely, is not helpful.

19

Metatone 04.02.14 at 4:18 pm

I do sympathise, but believe it or not, the other side of the coin is pretty ugly too. We’re watching academics try to destroy the idea of “dyslexia” – and along the way destroying the basis for any help that our daughter gets at the moment. Labels are ugly, but in a lot of ways they at least give you an in to talk about difference and different needs…

20

The Temporary Name 04.02.14 at 4:39 pm

Many thanks for the thread.

21

Sev 04.02.14 at 8:12 pm

I have worked with individuals such as this (Down’s syndrome also) over many decades. In the case of a number of them, I may well know them better than anyone else. They are all unique individuals. Nevertheless, the idea of a spectrum of autism does not seem unreasonable to me. Curiously, they seem to me to cluster either at the mild or severe end of this, whether this reflects any underlying reality or merely the limits of my sample size I don’t know. Severe autism can be extraordinarily challenging; a movie like “Rain Man” really gives you only an inkling of this. It requires one to drop one’s preconceptions, in particular the fantasy of a cure, and simply work with the person as they are. I may be helped in this by having a moderately OCD type personality myself. I’ve had some insanely awful times with some of them, and quite wonderful moments as well.

22

godoggo 04.02.14 at 10:55 pm

I knew a young girl who I guess was dyslexic. If she wanted to read a book, she’d stare at one open page and read the text of the other out of the corner of her eye. Which was difficult, apparently. People are weird.

23

Shatterface 04.03.14 at 1:44 am

I’m an Aspie, and I have traits not symptoms

I’m happy with the idea of a spectrum as long as people recognise that each trait is on a spectrum of its own so I’m not represented by a single place on a single spectrum.

I hate the fucking puzzle metaphor: I’m not a curiosity for neurotypicals to amuse themselves with, and I’m not a jigsaw with a piece missing.

If I want to explain what it’s like being an Aspie I tell people to watch Blade Runner: that’s what it’s like when you are bombarded with sensory information you can’t filter; that’s what it’s like to be alone in a crowd of people who babble incomprehensibly and have motivations you can’t begin to understand; that’s what it’s like to present a ‘lack of affect’ when your emotions tear you up inside; and that’s what it’s like to be subjected to diagnostic tests of ‘empathy’ that tell people you are less than human.

24

musical mountaineer 04.03.14 at 2:17 am

It’s a limitation an adaptive function of the human mind, to generalize erratically reduce uncertainty from salient unrepresentative samples individual life experience.

FIFY, within a subset of conditions, the bounds of which you are free to define for yourself.

25

musical mountaineer 04.03.14 at 2:38 am

Mind you, I don’t in the least want to be unkind to the OP; I have the utmost sympathy. My comment is not about autism as such and should not be taken that way.

Regarding autism, it is no surprise to me that individuals evincing strong “autistic” traits should have widely different assessments on every axis known to psychology.

26

musical mountaineer 04.03.14 at 3:11 am

To be precise, “widely varying assessments”

27

musical mountaineer 04.03.14 at 4:01 am

“that’s what it’s like to be subjected to diagnostic tests of ‘empathy’ that tell people you are less than human”

True, that. If your empathy happens to be overdeveloped, then as far as humanity is concerned you have no empathy, because there is no way for normals to relate.

28

bad Jim 04.03.14 at 5:23 am

I’m unsatisfied with the concept of a sexual continuum, as though there was a single underlying variable. There is a range of behavior which might be usefully considered as various collections of different traits. Most of us know by now that not all gay males are effeminate, for example.

Autism is another case in which the diagnostic criteria are somewhat vague and the underlying factors completely obscure. The worst cases seem to be clear and the mildest cases are debatable. (A high school classmate thinks he’s on the spectrum and that I may be as well. I’m fairly certain he’s wrong in both cases.) It’s possible that there is a consistent syndrome of variable severity with one underlying cause, a consistent syndrome with various causes, or a collection of developmental deficiencies with common components and a single or multiple causes, like everything else.

It’s altogether wonderful that we’ve begun to identify things that help those so afflicted lead better lives, that sometimes their problems can be treated as learning disabilities which can to some extent be overcome with special treatment, and in some cases are merely difficult people we can learn to live with.

29

bad Jim 04.03.14 at 5:56 am

Shatterface, I think the puzzle metaphor is meant as a description of our ignorance of the phenomenon rather than a depiction of the people so labeled.

Your “traits” distinction is good and deserves wider usage.

Forgive me, but “a crowd of people who babble incomprehensibly and have motivations you can’t begin to understand” describes downtown Laguna Beach. Sometimes I can’t even guess what language people are speaking, and all too often they don’t seem to be aware that other people might want to share the sidewalk with them, or that traffic lights have a specific relationship to both pedestrian and motorist behavior.

30

NMissC 04.03.14 at 2:51 pm

I have a sub-specialty of representing families of autistic children in due process and similar matters in public schools. A common factor for these children that has struck me was that, as individual as each was and as varying as their traits, there was a certain type of school personnel that would react to any of them in the same wrongheaded ways. It’s almost as if the personnel, deep down, felt, “I look at you and you look like all the other children, so I am going to shove back.” There would be ongoing crises until my intervention. One of my goals would always be to work to re-adjust the child’s routine so they were no longer exposed to the particular doltish personnel; thereafter, I’d hear later from various sources “The kid is performing so much better under the new education plan,” which really to a degree involved, “The kid is performing so much better now that he doesn’t have to be around someone who almost willfully refused to attempt to understand him.”

31

Shatterface 04.03.14 at 5:35 pm

It was a moment of profound revelation to me when I discovered the reason the other kids at school had beat the living shit out of me was because they were naturally empathic and I was not.

32

musical mountaineer 04.03.14 at 7:54 pm

“they were naturally empathic and I was not”

So, what do you do? Can you compensate for that?

I have the opposite problem: my empathy is intense. Often, I feel other people’s emotions more strongly than they themselves feel. I’ve basically spent my whole life getting chewed on like a big juicy steak by narcissists and sociopaths.

33

musical mountaineer 04.03.14 at 9:51 pm

Shatterface @ 31,

The more I think about your comment, the more it troubles me.

It is a fine thing to have revelations; revelations are good, as a rule. That you could arrive at the place of wondering about your own “empathy” indicates you are thinking outside your condition, which is a brilliant thing to do and most people die without ever doing it once.

The problem is, you’re still pathologizing yourself. You got beat up, you say, because you have some blown fuse in your head. It’s your defect, your fault. There are several objections to this.

Most obviously, anyone who would beat up an Aspie isn’t exactly winning the empathy sweepstakes, you know? Sociopaths lack empathy, and they don’t seem to gain much by it, in cognitive terms. But they do fine in school. Nobody beats them up. The teachers are only too happy to enlist the sociopaths in their classes, to grind the bumps off everybody else.

No, it’s not the lack of empathy on your part. You’re an Aspie, thus obviously different, even if nobody can say exactly how. The evil of this world does not tolerate the different.

I felt sorry for myself when I realized, after decades of suicidal ideation, I’d have to fake it for the rest of my life. But Jesus…for you, that’s not even an option.

34

musical mountaineer 04.04.14 at 2:30 am

“for you, that’s not even an option”

Or, you know, maybe it is. It’s like the lady says, it’s hard to understand if you’re not a part of it.

35

Shatterface 04.04.14 at 11:02 am

I think some people might have missed the irony in my last comment.

Which I suppose gives you a sense of what being an Aspie can be like.

36

Katherine 04.04.14 at 1:46 pm

Shatterface, it was obvious to me you were being sarcastic. Clearly the point went right over musical mountaineer’s head.

37

Ingrid Robeyns 04.04.14 at 2:32 pm

Shatterface: thanks for contributing. I haven’t watched Blade Runner but will do so. As for the puzzle metaphor, I agree with what Jim @29 said. I am pretty sure the person who proposed that metaphor is not the kind of person who sees autistic people as a curiosity, but rather someone who is devoting his/her life to trying to generate more respect for people with autism and awareness of how autism-unfriendly the world is. But if the metaphor is no good, we should discard it and find something better (except if we would all agree that it’s better to get rid of metaphors altogether – but I’m not willing to give up on that yet). Also, what the metaphor tries to convey is that there are people (I am likely in this category) who are not autistic but yet have more autistic traits than neurotypicals (that is, the autism phenotype). I am not sure how that can be captured with the spectrum-metaphor. I agree with you that the idea of a spectrum where each trait is on a spectrum of its own comes close to what we are looking for, but that may be too complicated to work well as a metaphor.

38

musical mountaineer 04.04.14 at 2:52 pm

“the point went right over musical mountaineer’s head”

Ah. Thanks.

39

SusanC 04.05.14 at 5:18 pm

The research group I work for does some autism researxch,so I sometimes find myself doing the statistical analysis on autism experiments. As a possible statistical take on this post:

- The idea that “autism” might be several different things that have been lumped together, rather than one single thing, is often raised
– One statistical consequence of this might be high variance (of whatever characteristic you’re measuring this week). If your experimental sample of people with “autism” actually consists of “autism_1″ and “autism_2″, and only people who have “autism_1″ have elevated levels of the characteristic you’re measuring this week -> high variance.
– If the within-population variance is high, the sample size you need to conclude that there’s a statistically significant difference (in whatever you’re measuring this time) between people with “autism” and your control group goes up.

In non-statistical terms: if autism is highly variable (and it does seem to be highly variable), then the number of examples of it you need to see to get a feel for “what it is like” is quite high; possibly people who aren’t either autism researchers or with some personal connection with the condition don’t get to see enough examples.

=====

@31 is a dark joke, I take it. But compare (for example) Simon Baron-Cohen on different kinds of empathy; so although it’s a joke, it’s a pretty good description of the kind of theory-of-mind difficulty that is considered typical of autism, and the diagnostic distinction that is drawn between autism and (say) antisocial personality disorder [With the proviso that autism is highly variable, so your mileage may vary on "typical" features]

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SusanC 04.05.14 at 5:27 pm

Personally, I think autism is one of the more “understandable” conditions, in that the words and actions of people diagnosed with it usually make some kind of sense to me. (Constrast, say, schizophrenia. I have much more difficulty making sense of psychotic delusions. I’m not saying there isn’t any sense in psychosis, just that personally I have a harder time figuring out what it is).

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