"I had always known she had to have a routine"

February 24, 2010 6:14 AM

Why autism is different for girls: "We may think it only affects boys. But the female variant is often much harder to spot – and that means thousands of girls may be going undiagnosed."
posted by Len (89 comments total)

"I had always known she had to have a routine. She never really played with dollies or liked imaginative games like other girls. She asked very complicated questions, constantly seeking and clarifying her perception of the world. I had to be very careful with expressions like "he will bite your head off" because she would understand it literally and be frightened."

Maybe it's just me, but this kind of description seems like it does more harm than good. All of my kids are the exact same way. Not too interested in imagination games, asking complicated questions, asking about perception vs reality and overly literal. The oldest one, who was the most like this, was taken to a neurologist as a toddler. Negative on both autism and Aspergers.

IMO, the described symptoms also describe smart people. Smart people are a lot more common than people with autism. Taking an array of (mostly) positive characteristics such as "complicated questions" and "asking about meaning" and labeling them as indicative of a brain disease is not a great idea.

The article goes on to describe things like obsessive behaviors such as biting and anorexia. That's a much better type of list to use as warning signs than the above.
posted by DU at 6:54 AM on February 24, 2010 [14 favorites]

The effect of starvation on brain function impairs set-shifting – the ability to think flexibly and to multi-task instead of focusing on one thing – and the ability to read other people's minds.

starvation impairs telepathy? I don't think autism in girls is really the most noteworthy discovery here.
posted by episteborg at 6:57 AM on February 24, 2010 [17 favorites]

It's not my field or anything, but it sure seems like this article (or the people featured in it) are attempting to co-opt autism as a label for a different set of disorders. I don't know if there's some advantage to be gained from that but on the surface it seems fishy.
posted by wabbittwax at 7:00 AM on February 24, 2010 [1 favorite]

I agree, seems fishy.
posted by Miko at 7:09 AM on February 24, 2010 [1 favorite]

I went through this recently, seeing a therapist and getting a big ol' negative for Asperger's.

Apparently, being an intelligent only child will make you plenty neurotic on its own.

Even so, this Asperger's stuff is totally the new fad diagnosis: "My kid doesn't think my jokes are funny, she must be autistic!"

I don't know if there's some advantage to be gained from that but on the surface it seems fishy.

It's also not my field, but I notice plenty of advantage to be gained from having a medical excuse for atypical behavior. The "sick role" gets you cut a lot of slack.. whether you've got a cold and your s.o. drives you to get ice cream, or you have Asperger's and your parents give you lots of personal space and structure.
posted by edguardo at 7:14 AM on February 24, 2010 [1 favorite]

I had the same feeling as Miko and wabbittwax. It does worry me a bit that autism may become the new term to be applied across kids with differing needs, just as AD(H)D was previously.
posted by Doug Stewart at 7:15 AM on February 24, 2010 [3 favorites]

Autism is not a cut-and-dried diagnosis. The autism spectrum is so named because a wide variety of conditions are covered by it, not just one. A person may have some symptoms found in the autism spectrum, but not be "autistic" or even have Asperger syndrome.

If there are symptoms characteristic of the autism spectrum that can be found in many girls with anorexia or other conditions, it certainly may be useful to examine these conditions' similarities to and differences from established autism spectrum disorders.
posted by cerebus19 at 7:17 AM on February 24, 2010 [2 favorites]

I have a feeling that autism in general (and Asperger's in particular) are flavors of the month. Yes, they are real things. Yes, they have significant effects on people. But every five minutes, someone somewhere tries to ascribe anything unusual about a kid to one or the other.

It reminds me of the reactions just like a few years back, when every energetic, curious kid was mass-labeled as ADD and put on Ritalin. A few years from now people will have moved on to the next flavor, which will honestly be better for the kids who really are autistic, and better for the kids that are being shoehorned into that category by overanxious adults.
posted by caution live frogs at 7:18 AM on February 24, 2010 [1 favorite]

I agree, seems fishy.

Really? You're going to make a medical diagnosis contradictory to the professionals who have spent time with these girls because you read one article in a newspaper about them? Since when have we taken most mainstream science/medical journalism with anything more than a grain of salt?
posted by spicynuts at 7:20 AM on February 24, 2010 [2 favorites]

On further preview...you know what...I don't know anyone with autims/aspberger's, I don't know anyone who has children with the disorders, I have never knowingly met an autistic/aspberger's person and yet, all the doubt being thrown around up in here about 'medical excuses for atypical behavior' sounds a hell of a lot like 'depression is just laziness..snap out of it!'. What do you think the reaction around here would be if the same attitude showed up in a post about depression?
posted by spicynuts at 7:22 AM on February 24, 2010 [10 favorites]

I have a feeling that autism in general (and Asperger's in particular) are flavors of the month. Yes, they are real things. Yes, they have significant effects on people. But every five minutes, someone somewhere tries to ascribe anything unusual about a kid to one or the other

Medical anthropology has always fascinated me because there really are culturally and historically specific reasons why diagnoses get developed and issued.

Looking at anorexia as a form of autism concerns me a little. If anorexia is no longer viewed in its cultural context - as obsession surfacing within a culture also obsessed with thinness - there's perhaps some risk that critical examination of those cultural factors will be let off the hook, too.
posted by Miko at 7:27 AM on February 24, 2010 [4 favorites]

I wrote about this earlier for Time.

There are connections both genetically and in the phenotypes. Basically, the idea is that if you apply the systematic, obsessively focused type of thinking that predominates in autistic spectrum disorders to socializing and to dieting, you wind up with something that looks a lot like anorexia.

It makes sense that in a world where girls are pushed to socialize and worry about their bodies much more than boys are, this would be one way that that thinking style would manifest in females.
posted by Maias at 7:28 AM on February 24, 2010 [14 favorites]

This is old news - back in 2005 autism experts were calling for re-evaluating young women with anorexia to see if they had autism.

And yes, to totally agree with spicynuts - all of you armchair psychologists who've never met anyone with autism or asperger syndrome; does it make you feel big and clever to belittle other people's problems? To jump to conclusions about diagnoses being wrong? If so you seem to be more lacking in empathy than most people with autism I've met.

"IMO, the described symptoms also describe smart people. Smart people are a lot more common than people with autism. Taking an array of (mostly) positive characteristics such as "complicated questions" and "asking about meaning" and labeling them as indicative of a brain disease is not a great idea."
Yeah, that's why a proper autism assessment (such as ADI-R plus ADOS) takes several hours of intensive work with the child and family to complete. Diagnoses aren't handed out like sweeties, whatever some people would like you to believe.

I hope you all like it up there on your high horses.
posted by Coobeastie at 7:34 AM on February 24, 2010 [1 favorite]

Really? You're going to make a medical diagnosis

When did I make a medical diagnosis?

I don't know anyone with autims/aspberger's, I don't know anyone who has children with the disorders, I have never knowingly met an autistic/aspberger's person and yet...

I've known and taught a lot of people with all of the above. Raising the question "do we understand these conditions well enough yet?" seems fair. In fact, I'd ask the same of depression: do we understand it well enough yet?

I think you're reading into the responses. We have a nascent theory here. Some people are voicing skepticism that the theory will hold. I think that's a rational and acceptable response to the content of the article.

The article itself makes some interesting points, but one-fifth of anorexics is not all anorexics, so I think the autism spectrum so far fails to explain all anorexia. Also, the article wanders - the point about anorexia as sometimes misdiagnosed autism is interesting, but then it becomes more general, discussing girls who exhibit more standard autism-spectrum symptoms. It seems that laypeople not realizing that many girls are on the autistic spectrum might be more of a public-perception and awareness question than a question of misdiagnosis or misapplied criteria. Beyond the brief discussion of anorexia, the article doesn't go deeply enough to say whether misdiagnosis or missed diagnosis might be prevalent from the medical profession's point of view.
posted by Miko at 7:35 AM on February 24, 2010 [1 favorite]

@Miko - there's already at least one book on the anthropology of autism (in that case combined with memoir of their own child).

This is not, as this thread would like to make out, an unexamined subject.
posted by Coobeastie at 7:36 AM on February 24, 2010

Maias: Your article is much clearer and fuller.
posted by Miko at 7:38 AM on February 24, 2010

To folk who were getting a fishy vibe: I didn't get that at all from the article; and I thought that the fact the whole piece was framed by quotes from a King's College academic, rather than some random quack, gave it legitimacy. Admittedly, it's an area in which I have no expertise or academic interest, but on the whole I thought the subject was fascinating.

On preview: I see that Maias' article for Time also quotes Janet Treasure. Always interesting when someone who actually knows what they're talking about turns up on MeFi. Maybe I ought to have posted your article instead (Miko is right; it's much clearer).
posted by Len at 7:44 AM on February 24, 2010

Even so, this Asperger's stuff is totally the new fad diagnosis...

It's also not my field, but I notice plenty of advantage to be gained from having a medical excuse for atypical behavior. The "sick role" gets you cut a lot of slack.

Asperger's syndrome, despite the habit many people on the internet have of using it as a synonym for "asshole", is not a fad. Medical explanations for behavior are not "excuses". Accommodations for people with disabilities are not "slack".
posted by Daily Alice at 7:45 AM on February 24, 2010 [9 favorites]

wabbittwax : It's not my field or anything, but it sure seems like this article (or the people featured in it) are attempting to co-opt autism as a label for a different set of disorders.

You could say the same for the last 20 years of "autism" research.

A really horrible disorder where someone shows no interest in communication or social interaction and repeatedly slams their head against the walls (or various other repetitive pain-causing behaviors) for stimulation, has extended to include every antisocial trait people notice in their precious little lardflakes.

I consider Aspergers probably the best example of this. Does it exist as something real, which in the worst cases can all but preclude a person having a normal life? Yes. Going by a description of the symptoms, though, you could label 2/3rds of all geeks as having it (and many such geeks do self-label themselves as such), which just does not hold true. Geeks have a reputation for acting antisocially mostly by choice (and I say this as a geek who cares little for social interaction by choice).

Sorry, but... "Not yours". We don't all need our own disease-of-the-month to give our lives meaning. Some people can write code in their sleep; some people can't figure out how to charge for no lettuce when the picture on the register clearly shows lettuce; some people can schmooze their way through any situation; some people have no interest in playing along with "society"; some people can lift small cars; some people can barely lift their own bodies off the sofa. None of these makes you "special". Take a number, folks, because that amounts to the only unique thing you'll ever have or do.
posted by pla at 7:46 AM on February 24, 2010

Yes, what we need to worry about is UNDERdiagnosis of autism...
posted by Mental Wimp at 7:48 AM on February 24, 2010 [1 favorite]

I hope you all like it up there on your high horses.

Seriously people. They don't walk the kid into the office, kind of look them over once or twice before loudly announcing "AUTISM!" Flavor of the month or not, Autism is not widely covered by insurance a this point. Nobody is clamoring for their kid to be diagnosed as such.
posted by P.o.B. at 7:53 AM on February 24, 2010 [2 favorites]

One of the questions I would have is why there would be a difference in the age of onset. The autism-spectrum kids I have known started evidencing symptoms by the age of three or so. By kindergarten/first grade, differences from typical students were easy to spot.

With anorexia and social ostracization in girls, the onset seems to occur much later - prior to and concurrent with the onset of puberty.

I wonder how this could jibe with the theory.
posted by Miko at 7:54 AM on February 24, 2010

"IMO, the described symptoms also describe smart people. Smart people are a lot more common than people with autism. Taking an array of (mostly) positive characteristics such as "complicated questions" and "asking about meaning" and labeling them as indicative of a brain disease is not a great idea."

Yeah, that's why a proper autism assessment (such as ADI-R plus ADOS) takes several hours of intensive work with the child and family to complete. Diagnoses aren't handed out like sweeties, whatever some people would like you to believe.

I knew I should have pre-emptively distanced myself from the "autism is fake" crowd. I'm not talking about diagnoses. I'm sure that 100% of all official diagnoses are 100% accurate. Not really, but that's not my point at all.

My point is that publishing articles that list "symptoms" like "asks complicated questions" is a really poor idea. What about not liking American Idol, is that a symptom of autism? Voting for Obama, is that one?

Lists of symptoms in lay articles should be things that have a really good chance of predicting the presence of autism. "Asks complicated questions" is not one of those.
posted by DU at 7:57 AM on February 24, 2010 [1 favorite]

I knew I should have pre-emptively distanced myself from the "autism is fake" crowd.

To be clear, I don't think it's fake either, but I do think it's one of the diagnoses (like ADHD) that may have become problematically generalized. I was a teacher too long to doubt the existence of autism disorders as a definite reality.
posted by Miko at 8:00 AM on February 24, 2010

DU, that was the mom talking about the early "symptoms" she noticed.
posted by P.o.B. at 8:02 AM on February 24, 2010

I consider Aspergers probably the best example of this. Does it exist as something real, which in the worst cases can all but preclude a person having a normal life? Yes. Going by a description of the symptoms, though, you could label 2/3rds of all geeks as having it (and many such geeks do self-label themselves as such), which just does not hold true. Geeks have a reputation for acting antisocially mostly by choice (and I say this as a geek who cares little for social interaction by choice).

How do you think these diagnoses are arrived at? You seem to be under the impression that all it takes to be diagnosed with Asperger's is someone looking at the DSM criteria, checking off a few boxes and going "Hmmm, yup, ok you got it." By definition Asperger's causes severe impairments in daily life. This does not describe 2/3 of geeks. My son underwent hours of testing and observation over a period of weeks by a team that included two psychologists, a psychiatrist, occupational and speech therapists before getting a diagnosis. It's not a made-up label for geeks. It's a real thing that causes real people real suffering.
posted by Daily Alice at 8:05 AM on February 24, 2010 [8 favorites]

Interesting article, but I have no idea why they'd include this bit:

The typical high functioning male, if he is lucky, finds a secure post in a university where he can use his exceptional powers for academic study, shunning most social contact as the "eccentric professor", and relaxing at home with his train set in the attic.

One of the biggest annoyances that parents of Autistic children have to deal with is the belief that all Autistic kids are savants. I can't figure out why the Guardian would say something like that.
posted by roll truck roll at 8:06 AM on February 24, 2010 [1 favorite]

To be clear, I am being facetious. I think right now in medical history, earnest people are trying to figure out just how to deal with some kids' behaviors, and one mode is to lump it with autism, even though it doesn't really fit. Medicine has a pattern of doing this sort of thing when insufficient information exists and when the population desperately wants a diagnosis for unwanted conditions (a perennial state of need, apparently). I've taken care of large groups of autistic children, and, believe me, when you do that you get a very clear idea of just how totally dysfunctional autistic kids are. You (a stranger like I was) cannot make any sort of social contact with them. You are like a piece of furniture or an appliance to them. Their behavior is bizarre and perplexing in intent. They stare at inanimate objects intently and for long periods of time. They don't go to the bathroom. They mimic seeking attention without eye contact or vocalization. They make weird noises and intense repetitive motions. You can spot 'em in a second.

I'm sure that professionals and parents who seek to apply the autism label to children without such profound disabilities are doing so in the firm belief that they are helping those kids. There certainly are social and financial support systems for kids with that label, and dispensations in the educational system, so there are incentives for applying the label. However, I'm not sure that it helps the kids with the profound autism, because it changes expectations for all kids with that label and may cloud research into the classic form.
posted by Mental Wimp at 8:07 AM on February 24, 2010

DU, that was the mom talking about the early "symptoms" she noticed.

And? If the mom had said "She always really liked milk" or "She's always understood the superiority of the White race" would the Guardian have printed it? At the very least have an expert on right after that saying "actually, doing smart or dumb stuff is not a symptom of autism in itself..."
posted by DU at 8:09 AM on February 24, 2010

There certainly are social and financial support systems for kids with that label, and dispensations in the educational system, so there are incentives for applying the label.

Not from my experience but I guess casting aspersions as such seems to the MO here set early on.

At the very least have an expert on right after that saying "actually, doing smart or dumb stuff is not a symptom of autism in itself..."

You mean like the professor of psychiatry they quoted throughout the article that you seemed to have missed?
posted by P.o.B. at 8:14 AM on February 24, 2010 [1 favorite]

I had to be very careful with expressions like "he will bite your head off" because she would understand it literally and be frightened."

Anyone who's spent some time around kids will know that they're not great with non-literal translations of things. Comprehending sarcasm and symbolism and idioms is difficult for all kids up to a surprisingly advanced age - not just autistic ones.
posted by jimmythefish at 8:17 AM on February 24, 2010 [1 favorite]

You mean like the professor of psychiatry they quoted throughout the article that you seemed to have missed?

If you can provide the quote where the professor says the mom has no idea what's she's talking about and basically described smart kids, not ones with a disorder I'll gladly take back everything I said.
posted by DU at 8:23 AM on February 24, 2010

From National Autistic Society website listing future conferences, specifically, the one referenced in the FPP:

Autism spectrum disorders: courses and events
Advertisment image: {Link to Autism Services Directory}
Advertisment Caption: Diploma in understanding & managing ADHD & ASC with the application of NLP

Provider
Prime Performance Solutions Ltd

Event Date
22nd February 2010 - 26th February 2010

Prime Performance Solutions Ltd main website lists:

Our Specialisms

Neuro-
Linguisti
Programming

Attention
Deficit
Hyperactivity
Disorder

Autistic
Spectrum
Conditions

Nearly all of professor Janet Treasure's books concern eating disorders. Excerpt from an interview with the professor:
Q:Why do you enjoy research?
A:I guess I have a strong novelty-seeking trait...
posted by vapidave at 8:29 AM on February 24, 2010

If you can provide the quote where the professor says the mom has no idea what's she's talking about and basically described smart kids, not ones with a disorder I'll gladly take back everything I said.

Why? That was your assumption? That the mother knows what she is talking about?
Perhaps the only thing I have left to say is I think it would be better if you did not cherry pick something from an article, make bland negative assertions, and set a bad tone for discussion here, but you know that already and I can only guess that was your intent.
posted by P.o.B. at 8:37 AM on February 24, 2010 [1 favorite]

And turning to business news, squeezebox manufacturers are reporting record sales projections for the second quarter.
posted by rusty at 8:39 AM on February 24, 2010

That was your assumption? That the mother knows what she is talking about?

My primary assumption was that an article on the topic of spotting autism in girls would have some information on spotting autism in girls and not be filled with red herrings.

But now that you mention it, yes, that was another assumption. She has two autistic daughters, for crying out loud!
posted by DU at 8:41 AM on February 24, 2010

I think the obsession with taxonomy of all the ways human beings can have difficulty is pretty strange. Human behavior is pretty eccentric, there are lots of differences in all sorts of apptitudes and there are plenty of things that if you are bad at them it makes your life worse. And sometimes you can do something about it and sometimes you can't, but I think there's a strong seductive element to classifying things as disorders. Once a harmful or inadequate behavior or deficiency has a name it is divorced from the realm of human agency. I remember that episode of the Cosby show where Theo was diagnosed with dyslexia and all of the sudden his academic performance was no longer his fault it was dyslexia's fault. But what if he was just not good at reading, or even dumb in general? Would it still be his fault? And what if he was lazy?

My point is not (as it might sound) that certain things are over or under diagnosed. I don't know whether that's true or not. Or even that such taxonomy is inappropriate. I just think the way we classify things and how certain classifications and how classifications interact with our ideas of merit and responsibility is both fascinating and almost certainly silly.
posted by I Foody at 8:41 AM on February 24, 2010

Miko, perhaps I am reading more into phrases like 'fishy' and 'fad diagnosis' than is there and perhaps it's shorthand for 'needs more research' but if you want to begin a serious discussion about complexities of this kind of stuff using words like 'fishy' and 'fad' probably is not the way to engender intelligent discussion. So I apologize if I misread shorthand as flippancy.
posted by spicynuts at 8:47 AM on February 24, 2010 [1 favorite]

My primary assumption was that an article on the topic of spotting autism in girls would have some information on spotting autism in girls

It did. Now your floundering to support an argument with a quote that in large part had nothing to do with the article. Have fun with that.
posted by P.o.B. at 8:50 AM on February 24, 2010 [1 favorite]

I've taken care of large groups of autistic children, and, believe me, when you do that you get a very clear idea of just how totally dysfunctional autistic kids are.

I thought it was a spectrum disorder. Am I mistaken?
posted by spicynuts at 9:14 AM on February 24, 2010

Seriously people. They don't walk the kid into the office, kind of look them over once or twice before loudly announcing "AUTISM!" Flavor of the month or not, Autism is not widely covered by insurance a this point. Nobody is clamoring for their kid to be diagnosed as such.

Doctors don't. Unfortunately, school officials do.
posted by desuetude at 9:29 AM on February 24, 2010

spicynuts : They certainly are autistic even though they don't fit your ignorant and malignant assertions about real autistic people.

And here, you come back to my complaint about the overuse of "autism" - The two of you clearly both have experience with some farked up kids. Except, you both describe drastically different symptoms!

Mental Wimp describes something closer to "real" autism. You describe something that we don't have a good name for but, out of laziness (which I don't mean as an accusation of you, but rather, a whole profession), have decided to call "autism" on the thinnest superficial resemblances.


I thought it was a spectrum disorder. Am I mistaken?

Almost anything can exist on a spectrum. Blood pressure, heart disease, enjoyment of Jazz, dinner plate size. But you can't place "C#" on the same spectrum as "blue" just because they both involve some sort of frequency.
posted by pla at 9:39 AM on February 24, 2010

Asperger's syndrome, despite the habit many people on the internet have of using it as a synonym for "asshole", is not a fad. Medical explanations for behavior are not "excuses". Accommodations for people with disabilities are not "slack".

Asperger's is not a fad. It is a real disorder and a popular self-diagnosis. It's a fad diagnosis.

Medical explanations are not excuses, but there are people who seek to excuse their behaviors by blaming them on a medical condition. Some people are really allowed to do this, because they really have a medical condition that really causes atypical behavior.

I'm not thinking of factitious disorders, but rather of the countless people who simply find it easier to manage the idiosyncrasies in themselves and others by labeling those people, lumping them into a category, and creating a schema for dealing with them.

Accommodations for people with disabilities are not slack. Tolerance, understanding, and accommodation of neurodiversity is exactly what is lacking in today's society that makes autism-spectrum disorders so much more difficult.

Likewise with depression, which is all too often dismissed as a case of, well, needing to cheer up---and not as a serious psychological condition.

If we weren't so quick to categorize people and reduce them to their labels, then maybe we'd be forced to address the overwhelming diversity of human behavior as such and actually start treating people as individuals, rather than representatives of some caricature in our head.

Yes, some people are autistic. But they are people first and foremost, and I think the tendency to give everyone who "deviates" a medical condition is ultimately damaging to seeing them as equals in society.

Sorry if I allowed room to be interpreted otherwise.
posted by edguardo at 9:40 AM on February 24, 2010

Except, you both describe drastically different symptoms!

No. They described different kids. What makes you think people that fall under a disorder need to act exactly the same? Every autistic kid I've met acts differently than every other. Kind of like real people, ya' know?
posted by P.o.B. at 9:49 AM on February 24, 2010 [2 favorites]

if you want to begin a serious discussion about complexities of this kind of stuff

I don't know that I do, because this is starting to bear all the hallmarks of one of those subjects that can't be calmly discussed because many people have strong positions and personal experiences with the subject that make their patience shorter.

But I tend to agree with certain broad statements. One, that diagnoses of things with a large behavioral component are to a large degree socially constructed. We do learn more over time, we do refine, but in the end, we are attempting to pin down and classify complex phenomena that involve an interaction of an individual's genetic makeup with the complexities of society and circumstance. By their very nature, there is some subjective judgment and some cultural influence involved in these diagnoses. If that were not the case, we would find the symptoms, and their diagnoses and treatment, appearing more consistently and more predictably throughout all socioeconomic strata and across culture and time. I believe we have to be careful when talking about the realm of diagnoses of behavioral disorders, because they occur within a cultural context, and can be read in different ways at different times by different people, DSM or no DSM, as has been famously shown - last week, I heard Stanton Peele on the radio commenting on this with regard to the new DSM edition, "There are examples of fad and fashion in diagnosis," he says, giving as an example a recent and sudden unexplained increase in diagnoses of bipolar disorder among female children.

It may be true that we can sometimes identify ways to make people who are different more like the rest of us, or at least more able to function along with the rest of their peers, and perhaps where that is possible we should do so and continue pursuing ways in which to do so (there's certainly debate). But at the same time that we learn and amass evidence, we should be cautious in stating that we really do thoroughly understand the mind or the mind's interactions with society or cultural demands, or stating that all human variance is classifiable and identifiable according to a taxonomy of mental illness. One of my former roommates was a psychiatrist, and I sat with him many evenings over a glass of Scotch as he mused over the terrible imprecision of his art and the weighty consequences of some of his determinations.

At times in history, the learned a and situationally correct answer to "why does my daughter act so funny?" was "demon possession;" the answer to "why can't my child relate to others?" was Things do change, and we do learn, which oddly is the best argument for taking a relatively conservative position and giving a critical evaluation to new claims - because we have been wrong before, and the grip of mistaken ideas about human potential has been, and continues to be, crushing. At best, we have working theories of mind, not an omniscient understanding - and that is important for me always to remember, especially when labeling children, and when examining the environment for causes of behavioral problems.
posted by Miko at 9:59 AM on February 24, 2010 [2 favorites]

spicynuts : They certainly are autistic even though they don't fit your ignorant and malignant assertions about real autistic people.

That wasn't my quote. I didn't say that.
posted by spicynuts at 10:07 AM on February 24, 2010

i wonder if there's ever going to be a DSM entry for people who feel compelled to question other people's diagnoses online
posted by pyramid termite at 10:09 AM on February 24, 2010 [4 favorites]

Judith Warner of the NYTimes has published her book "WE HAVE ISSUES: Children and Parents in the Age of Medication."

Six years ago, she happily landed a book contract to explore and document the overmedication of American youth.

Readers of Domestic Disturbances, the online column Ms. Warner wrote for The New York Times until December, will be familiar with what happened next. She sallied forth to interview all the pushy parents, irresponsible doctors and overmedicated children she could find — and lo, she could barely find any. After several years of dead ends, missed deadlines and worried soul-searching, she was forced to reconsider her premise and start all over again.

posted by Hammond Rye at 10:19 AM on February 24, 2010 [1 favorite]

internet fraud detective squad, station number 9 : You are saying that because some people lose fingers to diabetes that people who do not lose fingers do not have diabetes.

No. More like I said that not all people with high blood sugar have diabetes.

Both sets of kids clearly have some sort of social aversion. Mental Wimp describes kids with zero socialization or interest in the same, classic autistic "stimming" behavior, and presumably severe cognitive impairment (people who can think clearly do not hurt themselves for fun). Spicynuts describes kids who want social interaction but don't understand it in the least. I would call those nearly polar opposites in terms of motivation, even if they share one superficial inadequacy.


And don't call them "farked up". They have a disability.

"They" don't care what I call them, one of the key traits of their condition.
And I thought "disability" had become unkosher as well.
posted by pla at 10:24 AM on February 24, 2010

Related: Temple Grandin just did a TED talk
posted by P.o.B. at 10:24 AM on February 24, 2010

Almost anything can exist on a spectrum.

Ok, seriously? I'm using the PSYCHIATRIC TERM spectrum disorder. I'm not just throwing the word 'spectrum' and 'disorder' together. It doesn't have the same meaning in psychiatry as it does in general or in other medical fields.

To apply this to your initial comment, here's the relevant pull quote from wikipedia:

"A spectrum may comprise relatively "severe" mental disorders as well as relatively "mild and nonclinical deficits".

Get my point? And to answer my own question, the wiki lists autism as a spectrum disorder? Do you see how that applies to your anecdotal experience with the kids you describe?
posted by spicynuts at 10:27 AM on February 24, 2010 [2 favorites]

people who can think clearly do not hurt themselves for fun

You just made me say "Are fucking kidding me?" out loud. Honestly, at this point I can tell you don't know what your talking about, and I'm far from being an expert.
posted by P.o.B. at 10:27 AM on February 24, 2010 [1 favorite]

Spicynuts describes kids who want social interaction but don't understand it in the least. I would call those nearly polar opposites in terms of motivation, even if they share one superficial inadequacy.

I haven't described any kids. I haven't described anything at all. Please start paying attention.
posted by spicynuts at 10:28 AM on February 24, 2010

Oh, a correction - I wrongly attributed that quote to Spicynuts, it actually came from internet fraud detective squad, station number 9. Sorry, both!


spicynuts : I haven't described any kids. I haven't described anything at all. Please start paying attention.

Damn dude, give me 30 seconds to get the correction posted! No malice intended, really.
posted by pla at 10:29 AM on February 24, 2010

spicynuts : I'm using the PSYCHIATRIC TERM spectrum disorder. I'm not just throwing the word 'spectrum' and 'disorder' together. It doesn't have the same meaning in psychiatry as it does in general or in other medical fields.

From your link: "the term spectrum suggests that although there is a common denominator, a particular set of individuals may present with a particular pattern of symptoms (a syndrome or subtype), reminiscent of the visible spectrum of distinct colors after refraction of light by a prism."

Apparently we disagree about the "common denominator", but our working definitions seem sufficiently compatible.


Get my point? And to answer my own question, the wiki lists autism as a spectrum disorder? Do you see how that applies to your anecdotal experience with the kids you describe?

Look, I obviously can't argue that Wiki (or the DSM) calls all these various socialization deficiencies part of a spectrum lumped under the word "autism".

But if you want to understand why so many people find that claim laughable, you should probably take my stance a bit more seriously. I don't mean that as an argumentum ad populam - Just saying, don't act surprised and offended when you call a rose a cat, and people raise an eyebrow at you.
posted by pla at 10:36 AM on February 24, 2010

From the article:

The typical high functioning male, if he is lucky, finds a secure post in a university where he can use his exceptional powers for academic study, shunning most social contact as the "eccentric professor", and relaxing at home with his train set in the attic.

Am I mistaken or is this a pretty offensive characterization of a "typical high functioning male" with autism? Serious question. My impression was that the "idiot savant" theory of autism had been discredited. It's a disorder (disease?), not a quirky superpower.
posted by i'm offended you're offended at 10:44 AM on February 24, 2010

Just saying, don't act surprised and offended when you call a rose a cat, and people raise an eyebrow at you.

Y'know, thinking about it, I want to elaborate on that point a bit.

No one has said that these conditions don't exist. Overdiagnosed? Perhaps, perhaps not. But Spicynuts' comment on definitions illuminates the real problem here:

Nomenclature

If you want people to take this seemingly haphazard collection of symptoms seriously as a disease, give it a new name. Simple as that.

A quick search of MeFi reveals dozens, if not hundreds, of threads rehashing these same points over and over; and not one of those conversations would have happened if the DSM had decided to call it "Bwargle's Syndrome".

Yes, most people may well have wildly inaccurate ideas about autism, even about most psychiatric conditions in general. Calling them "wrong", even on easily proven matters of fact, rarely gets anywhere. On fuzzier matters that (as some have pointed out) take two psychiatrists, half a dozen social workers, several months of observation, and a yak? Yeah, good luck with that one.
posted by pla at 10:45 AM on February 24, 2010

I see a lot of people bring up self-diagnosis of Aspergers in discussions like these, but I have to say it doesn't seem that prevalent. I see more complaints about this behavior than I see the behavior itself.

Self-diagnosing people can be annoying, and I would encourage them to seek professional advice, but I don't think they're necessarily doing harm. It's certainly better than people with the disorder going undiagnosed because there's a stigma against suspecting you have it or talking about it.
posted by Solon and Thanks at 10:47 AM on February 24, 2010 [1 favorite]

"They" don't care what I call them, one of the key traits of their condition.
And I thought "disability" had become unkosher as well.

STOP WITH THE FIGHTY.
posted by kittyprecious at 10:50 AM on February 24, 2010 [1 favorite]

Just saying, don't act surprised and offended when you call a rose a cat, and people raise an eyebrow at you.

I believe that is what you are doing pla; or no?

You are calling people who suffer from elements on the Autism Spectrum Disorder... Not Autistic... because you, and others for whatever reason... say so.

That rose (cat?) you speak of is having a hardships in life, because people say... you're just weak, or less adaptable, or less mentally strong, or less coping with pain, or you are making up that diagnosis... diagnosis helps people get the attention and help BEFORE Disorders move into becoming life debilitating illness.

Give it a new name? but these are related expressions of disorder... also... who's to say that people would not come in and say "Oh, your just over-diagnosing THAT disorder now."

Changing the name would not change the game.
People need help, people need assistance... I don't care if you want to study it for the next 20 years and decide to call it something else at the end, but people living today need help and understanding in order to get through tomorrow.
posted by infinite intimation at 10:53 AM on February 24, 2010 [1 favorite]

"They" don't care what I call them, one of the key traits of their condition.

bullshit - just because a person is autistic does not make them totally unaware of people's insults or make them unable to hurt from what is said about them

many of them DO care if you call them "farked"or something worse - my daughter would

you don't know what you're talking about and you're talking about it rather obnoxiously
posted by pyramid termite at 11:00 AM on February 24, 2010 [1 favorite]

Damn dude, give me 30 seconds to get the correction posted! No malice intended, really.when you do that you get a very clear idea of just how totally dysfunctional autistic kids are.

So, my bad. I'm sorry.
posted by spicynuts at 11:04 AM on February 24, 2010

Related: Temple Grandin just did a TED talk

The new HBO docudrama about Grandin is very good, btw.
posted by homunculus at 11:08 AM on February 24, 2010

infinite intimation : Give it a new name? but these are related expressions of disorder... also... who's to say that people would not come in and say "Oh, your just over-diagnosing THAT disorder now."

That may well happen. But that difference alone would put me on the opposite side of the fence here. I realize I don't write as delicately as some, dancing around how I really feel about the issue; but you can take what I say at face value. Don't call it autism, and we agree (almost) completely that a problem exists for which people need help.


pyramid termite : many of them DO care if you call them "farked"or something worse - my daughter would

Then - And you'll probably want to cover your ears for this - I would not call her autistic.


you don't know what you're talking about and you're talking about it rather obnoxiously

As I said above - Ignore me if you want, but realize that I don't express an extreme "out there" stance on this. Many, if not most, people consider diagnoses like this to be nothing more than a frivolous cash-grab (not necessarily by you, BTW - I mean that as a condemnation of the service industry that has arisen specifically to profit from these diagnoses) by appealing to the disease-of-the-month as little more than fashion. I will at least grant that some real problem exists, and believe that trying to lump it in with something more well-known does its sufferers a disservice.

MeFi posters tend toward the far liberal end of the spectrum, and even here you've seen such ideas presented, albeit more tactfully than I have done.
posted by pla at 11:17 AM on February 24, 2010

Then - And you'll probably want to cover your ears for this - I would not call her autistic.

let's see - should i take the advice of her psychologists, social workers, educators and doctors or listen to a blathering troll on the internet?

gosh, what a difficult choice
posted by pyramid termite at 11:22 AM on February 24, 2010 [4 favorites]

internet fraud detective squad, station number 9 : There are regular users of this website who have autism. This is probably the point where you should stop talking about your personal theory of autism because you are vaulting right over ignorant and landing in actively obnoxious.

I would welcome such a person responding to me. I would love to hear how someone with a disease (partially) characterized by a complete lack of empathy would explain feeling "hurt" by my statements. Really - I honestly would find that explanation, firsthand, fascinating.

To me, it seems far more likely that the "high functioning autistic" would consider me merely factually incorrect, and move along.

Hell, I don't claim to have any form of autism, and I take comments about my lack of tact as merely factually irrelevant and move along.
posted by pla at 11:24 AM on February 24, 2010

Many, if not most, people consider diagnoses like this to be nothing more than a frivolous cash-grab

Who the hell are these "many and most" people? What a bizarre claim.

Then - And you'll probably want to cover your ears for this - I would not call her autistic.

Are you trying to communicate that calling a child "autistic" -- the actual name of an actual disorder -- is somehow worse than calling her "farked?"
posted by desuetude at 11:36 AM on February 24, 2010

desuetude : Who the hell are these "many and most" people? What a bizarre claim.

Google "autism cash grab". I get 122k hits. I could try any of a number of additional phrasings to add to that number, but don't see much point.

Talking with people who don't mirror your beliefs tends to open your world-view a bit. I personally appreciate that about MeFi, and as much as you may consider me a troll or the like, I do enjoy learning strange new ideas from users here.


Are you trying to communicate that calling a child "autistic" -- the actual name of an actual disorder -- is somehow worse than calling her "farked?"

Nope. I didn't say that. I didn't even deny that calling someone (anyone, I did not say that explicitly about PT's daughter) "farked" carries a somewhat negative connotation¹. I said that I would not consider someone who can appreciate the emotional subtlety of a particular phrasing as autistic.

My opinion. You can (and clearly do) disagree.


_{1: Would you call such conditions anything other than "negative"? Do you pray that you might someday experience the joy of having for an autistic kid?}
posted by pla at 11:55 AM on February 24, 2010

Why do you get to decide what is and is not autism?
and this is not isolated... slashdot had a topic on autism recently, and even though every time there is a thread on the net about autism, we establish that no, we//you/us/ the unwashed internets, do not know everything about Autism... yet still there was a huge array of people there {not trained medical professionals} saying it's all a fad, and it's just grabbing for attention by
'geeks'... and other variations on this kind of ignorance.

Do we have to show EVERYONE who thinks they are smarter than medical profession why starting every discussion with a statement that it's all just BS anyway... is counterproductive to HELPING individual humans who need various DIFFERENT types of assistance, yet still suffer from a common disorder.
posted by infinite intimation at 12:06 PM on February 24, 2010 [1 favorite]

I think there has been some confusion about my earlier statement. The kids I looked after were in the range of 3-6 y.o. Clearly, with interventions that are available today, many of these kids might have been able to become as high functioning, perhaps, as Temple Grandin. My point was that it wasn't difficult at all to identify these kids as autistic. My skepticism relates to the labeling of kids who are functional but "having hardships in life" due to characteristics similar to some of autistic children as autism spectrum disorder. A huge proportion of children if examined closely enough have such characteristics. I certainly did at an early age. But I was not autistic. I was introverted, obsessive, and painfully shy. Psychiatry is not a magic science that can peer into the soul of people and say what's wrong. For most purposes, it rests on observation of highly variable events that are difficult to group and characterize, hence the frequent changes in definitions and instrumentation. Classical autism, like schizophrenia, is not all that difficult to identify. These other conditions may someday be shown to be connected to autism, but I would be astounded if they are ever shown to derive from the same defects in metabolism.
posted by Mental Wimp at 12:09 PM on February 24, 2010 [1 favorite]

The question of whether "high-functioning" autism/Asperger's is the same thing as "low-functioning" autism is a perennial debate on the "lumpers v. splitters" model. Right now the lumpers are winning; Asperger's syndrome does not appear in the new proposed edition of the DSM, instead being subsumed into Autism Spectrum Disorder. Opinions differ widely on whether this is a good idea or not. I think that those who question the Asperger's/HFA diagnosis and consider it a label for normal people who are geeks or introverts or shy or unempathetic have a profound misunderstanding of the way these kids live. A social skills deficit doesn't mean "geeky" or "shy." The skills that are lacking are things like impulse control, perspective taking, frustration tolerance, and other things that are essential to getting along in the world. My son has no intellectual deficits, but his social skills are at about the level of a 3-year-old (he's 7.) If you can picture a 3-year-old in a first grade classroom, you can get an idea of the kinds of support and services he needs to be able to function there. The good thing about a diagnosis is that it enables him to get the support he needs, and gives us a framework for the kinds of treatment that have been useful for other kids in similar situations.
posted by Daily Alice at 12:39 PM on February 24, 2010 [2 favorites]

I see a lot of people bring up self-diagnosis of Aspergers in discussions like these, but I have to say it doesn't seem that prevalent.

It seems to come up a lot on AskMe.
posted by rtha at 1:23 PM on February 24, 2010

It's interesting to see that the emerging epidemic of autism is beginning to attract the same kind of skepticism global warming has for a long time now, and probably on the part of many of the same people.

I think the underlying motivations for global warming skeptics and autism skeptics are basically the same.

It's fear.

They are beside themselves with fear.

The skeptics are profoundly afraid of what the future may hold for them, and their fear is so visceral and corrosive they can only deal with it by denying that anything is happening at all.

This strategy has a long history among us, but it generally hasn't worked out too well. I'll be interested to see how things go for pla and his pals.

Who knows, watching pla and company get covered inches deep from head to toe in some of the worst shit to ever hit the fan may be one of the few unalloyed pleasures we get for the next couple of decades.
posted by jamjam at 2:10 PM on February 24, 2010

Then - And you'll probably want to cover your ears for this - I would not call her autistic.

For the sake of clearing the water, can you outline what training and education you've had, or any research you've done, on autism and the way it manifests in different people?
posted by KathrynT at 2:13 PM on February 24, 2010 [1 favorite]

I would welcome such a person responding to me. I would love to hear how someone with a disease (partially) characterized by a complete lack of empathy would explain feeling "hurt" by my statements. Really - I honestly would find that explanation, firsthand, fascinating.

I have an asperger's diagnosis. I've mentioned it before.

My first reaction to your statement is that you are a goddamed moron, and that you are being deliberately stupid for the lulz.

I'm not going to explain this to you. First, I shouldn't have to. Autistic people are people, after all, and you don't seem to need an explanation for their feelings. Second, the fact that they might have a "typical" reaction doesn't preclude the reaction or it's effects.

I have spent decades in therapy for the various crap I put up with from my peers throughout middle school and high school. Even now, I cringe whenever I hear or see the word "geek" because that's what I was called - usually while being beat up or otherwise assaulted. I should know better than to read these threads, because they tend to make my stabby.

This therapy was in addition to the therapy that occurred after I got my diagnosis. One that you and others consider the "flavor of the month", a label engineered and designed so that I could use it make misanthropic douchebags like you feel bad ?

I spend a lot of time thinking about, and apologizing for, the weirdnesses of my every interaction with everyone everywhere. I'm not very good at it. I also don't really go in for "the victim" status, and I hate having to use my experiences as a bludgeon to make a point. That said, you couldn't be more of a jackass in my eyes, and if metafilter had a killfile, you'd now, after all the years I've been lurking and posting here, be the first one in it.
posted by Pogo_Fuzzybutt at 2:35 PM on February 24, 2010 [5 favorites]

I think pla is being a jerk.

However, I'm going to, personally, be much happier about diagnoses of autism and aspergers once those diagnoses are based on definitive biological tests rather than psychological evaluations. That should settle the issue once and for all, shouldn't it?
posted by Jimbob at 3:04 PM on February 24, 2010

Yikes, what a derail!

I almost certainly would have been diagnosed Asperger's as a child if I had been born now. I was instead diagnosed as "hyperesthetic" AKA oversensitive because I couldn't deal with loud sounds, bright lights, itchy clothes, many types of foods, hated to be held and had OCD-type repetitive behaviors. Oh yeah, I was also reading at 3 so I got "gifted" instead. And massively bullied by others because I was completely socially clueless.

My mom has a tendency towards extreme thinness (compulsive exerciser though no weight/body image obsession), as do other female relatives and my Dad was a chemist and mathemetically inclined guy.

So, to me, even before I heard this theory it made a lot of sense to me. Also, given that there are no drugs for Asperger's, the increasing prevalence of the diagnosis can't be explained away by evil pharma disease-mongering.

Labels help when they explain and harm when they limit. As Temple Grandin recently said to the WSJ, "The thing about being autistic is that you gradually get less and less autistic,”-- in other words, as you learn about the social world, you can get more adept if you choose to focus on it. That was half my problem as a child-- I didn't focus on social stuff because I was much more fascinated by ideas. So, no wonder I didn't learn it!

And lack of critical input at key developmental times can create "disabilities" that look fixed but are actually the result of the failure of the brain to get key input at that time. So, many of the disabilities associated with autism may not be due to problems with the autistic brain per se, but secondary to the withdrawal that comes from being socially rejected and unable to deal with massively overwhelming sensory input.

I wrote about that "intense world" theory of autism here:
posted by Maias at 3:05 PM on February 24, 2010 [3 favorites]

Jimbob : However, I'm going to, personally, be much happier about diagnoses of autism and aspergers once those diagnoses are based on definitive biological tests rather than psychological evaluations. That should settle the issue once and for all, shouldn't it?

This.

I will gladly recant everything I've said when (if) you can point to specific genes, or proteins, or chemical levels that positively identifies "autism". I strongly suspect, however, that such a test wouldn't have me the one eating crow here.

And yes, I do know about several of the assays currently used; but no, weak correlations with numerous counterexamples do not a definitive test make. Necessary and sufficient (and ideally, somehow scaling with the overt severity of the disorder).


Pogo_Fuzzybutt : you couldn't be more of a jackass in my eyes

Well, ask and you shall receive, I suppose. Very well, I apologize for using the word "farked" to describe autistics. I did not consider how such a term might make them feel, but will endeavor in the future to refrain from it and similarly hurtful terms.
posted by pla at 3:59 PM on February 24, 2010

Really? You're going to make a medical diagnosis contradictory to the professionals who have spent time with these girls because you read one article in a newspaper about them? Since when have we taken most mainstream science/medical journalism with anything more than a grain of salt? -- spicynuts

Oh come on, the field of psychology is rife with nonsense and trendiness. It's still considered a social science like sociology or something, and the people making these claims may not be 'medical' professionals, they could just be regular psychologists. We don't really know.

It's not like physics or microbiology or something, there is a lot of room for error on individual assessments, and a lot of it is subjective IMO.

In fact in the new DSM-V won't even have Asperger's as a separate category it will be merged with the "autistic spectrum". Obviously these things are pretty fluid and somewhat subjective.

I'm certainly not trying to say it doesn't exist or anything like that. Just pointing out that psychology isn't a hard science, and diagnoses and classifications are somewhat subjective.

IMO, the described symptoms also describe smart people. Smart people are a lot more common than people with autism. Taking an array of (mostly) positive characteristics such as "complicated questions" and "asking about meaning" and labeling them as indicative of a brain disease is not a great idea. -- DU

Even more annoying is the tendency to act like Autistic/Asperger people are somehow smarter/better/whatever then normal people. Obviously there are smart people with those issues, and there is people normal intelligence who have those issues as well.

The article even talks about "Exceptional Powers"

The typical high functioning male, if he is lucky, finds a secure post in a university where he can use his exceptional powers for academic study, shunning most social contact as the "eccentric professor", and relaxing at home with his train set in the attic.

Annoying
--

_{Almost anything can exist on a spectrum. Blood pressure, heart disease, enjoyment of Jazz, dinner plate size. But you can't place "C#" on the same spectrum as "blue" just because they both involve some sort of frequency.-- pla}

_{Why not? The EM spectrum goes all the way down to 0Hz, and includes frequencies that you would hear if you played them through a speaker. Just pointing out that you're analogy is wrong.}

I would welcome such a person responding to me. I would love to hear how someone with a disease (partially) characterized by a complete lack of empathy would explain feeling "hurt" by my statements. Really - I honestly would find that explanation, firsthand, fascinating. -- pla

Okay, that's just stupid. Pla clearly isn't really in a position to determine who is and isn't autistic. While I'm saying there is a subjective aspect to the diagnosis

I think the underlying motivations for global warming skeptics and autism skeptics are basically the same. -- jamjam

Protecting oil company profits? Seriously?

They are beside themselves with fear.

The skeptics are profoundly afraid of what the future may hold for them, and their fear is so visceral and corrosive they can only deal with it by denying that anything is happening at all. -- jamjam

That's ridiculous. Global warming deniers aren't afraid, they've been brainwashed by a well funded denial operation that's spanned decades and cost millions. The last thing they are is afraid, they honestly don't believe it. And anyway, global warming is nothing to be afraid of stopping should be easy, except for all the corruption.
posted by delmoi at 4:49 PM on February 24, 2010 [1 favorite]

pla; I am just highly puzzled about why you (and many others) think and feel it is in your qualifications and your job description to fight to UNdiagnose people and to strictly restrict the Spectrum of diagnosis... do we (modern western society) not want to give the same help to people with any of these symptoms (which hurt and harm their lives and well-being and happiness; & yes people with autism know happiness, just not always how/when/why to best clearly express it) no matter what the technical "diagnosis" is.

We should not be fighting to limit people getting assistance when they need it... or IS that what you advocate... are people who suffer the symptoms, but are not "diagnosed" just "fakers" following a fad and "trend" in your mind? Because then you are either pretending not to get that these symptoms (even if never "diagnosed" as Autism, can lead to things described above, like deadly eating disorders)

Is it really a contention that something can only require "care" if you can see a "gene" for it? Or if you have a biochemical test for it? Toughen up and just get out there in the sunshine Amirite? ugh

Because I think that view would limit who you would give help to when people suffer from clinical depression. We are making messed up society if we deny aid to people just because they aren't genetically or biochemically disordered.

Finally, pla (and I have seen the argument line before from others) why is it that you are only looking for someone diagnosed with a disorder... like THEN you would believe that it was real... if only you could have someone make it hit home with you. Bah, millions of people are affected, directly and indirectly by a series of interconnected disorders and symptoms, why do you get to insist that we have to be diagnosed personally with a disorder in order to have any position here.. can we not simply care about human people we know who suffer in this manner, just because you and I don't understand how someone else perceives an emotion... does not mean that no emotion is perceived.

I think people and families dealing with Autism would rightly say... wow, this thread is entirely hostile to me, and my family... and just avoid it.
This is not any way to start a discussion. You are coming in with this bull in a china shop, "my way is the one way" thing, and it's just not conducive to a real discussion (or to people dropping in and sharing personal anecdotes and stories. Why would someone come share a personal story, when there is an underlying accusation both stated and substated, that they are (or someone else just like them) is just a bunch of "spoiled" "fakers". We do not "coddle" people with disabilities (of any stripe); in fact we are quite rude, impatient, unforgiving and disinterested in people with disabilities... we have a long way to go before we can be accused as a society of treating people with disabilities TOO well.
If I seem to dislike your line of argument internet citizen pla, I do not mean to say I dislike you personally, it is solely for having seen so very many other people start the discussion with the same such statements, accusations and other expressions of misconception. Opinion masked as concern for the "integrity" of the diagnosis.
posted by infinite intimation at 4:51 PM on February 24, 2010 [2 favorites]

I will gladly recant everything I've said when (if) you can point to specific genes, or proteins, or chemical levels that positively identifies "autism".

s/autism/(depression|schizophrenia|IBS|Bell's Palsy|any other disease with a diagnosis of exclusion)/

I mean, seriously, why does autism need to meet such a high standard to be a real disease in your world?

I appreciate your apology to Pogo_fuzzybutt, but the mere fact that you made the statement originally is. . . astounding to me. I know autistic people, and in every case but one they are capable of empathy and having their feelings hurt. Even when they aren't capable of speech or being in the same room as a vacuum cleaner. Where are you getting your data?
posted by KathrynT at 5:16 PM on February 24, 2010 [1 favorite]

DSM: a work in progress, slowly changing. Like our understanding of human consciousness.
posted by ovvl at 5:25 PM on February 24, 2010 [1 favorite]

Google "autism cash grab". I get 122k hits. I could try any of a number of additional phrasings to add to that number, but don't see much point.

That just tells me that there's a lot of stuff posted on sundry websites. There's a lot of stuff posted on sundry websites about a lot of subjects that "most people" don't think about, ever. "Many/most people who spend time exploring different theories of the prevalence of autism diagnoses are aware of the prevalence of the opinion that Aspergers is overdiagnosed" is a whole different thing than your glib "Many, if not most, people consider diagnoses like this to be nothing more than a frivolous cash-grab..."

Nope. I didn't say that. I didn't even deny that calling someone (anyone, I did not say that explicitly about PT's daughter) "farked" carries a somewhat negative connotation1. I said that I would not consider someone who can appreciate the emotional subtlety of a particular phrasing as autistic.

The word "farked" isn't the point -- that sort of offhandedly snide remark doesn't require a high level of appreciation for pure emotional nuance. Someone can intellectually process that they're being mocked and be upset about it even if they don't even understand the meaning of the word you're using. I'll let others address your strangely black-and-white interpretation of how autistic people process language.

1: Would you call such conditions anything other than "negative"? Do you pray that you might someday experience the joy of having for an autistic kid?

It's a disability, it's an aspect of a person, not the sum total of their experience on this earth -- and not a black cloud that negates everything positive. We don't have much choice other than to do the best we can (with some help from medicine when necessary) with the bodies we're given.
posted by desuetude at 5:30 PM on February 24, 2010 [1 favorite]

"For those with high functioning Asperger's they can work out what they have to do – to remember to smile, to ask, 'How are you?' They need to work at it because autistic traits make them uncharming and can cause heartache throughout life. If they remember the social rules it makes them a bit more charming," Professor Treasure says.

This quote really, really bothers me. Because it seems to point to some sort of idea that women have a responsibility to be charming, and the weight it's given in the article makes it seem like that is one of the real traumas of autism in women, other than the links to anorexia, is that the female sufferers are insufficiently ingratiating. That's really offensive to me.
posted by winna at 5:44 PM on February 24, 2010 [1 favorite]

KathrynT : I mean, seriously, why does autism need to meet such a high standard to be a real disease in your world?

It doesn't. I've said over and over that I accept autism as a real disease. I've also said that I accept the host of conditions now lumped under that word as real, as well. I don't, however, consider them the same thing (or necessarily even related until proven otherwise), and I consider it intellectually sloppy to call them the same thing (and if that means I've just flipped a big middle finger to the APA, then so it goes).

I also consider it counterproductive as far as treatment goes - What I consider "real" autistics almost completely fail to respond to any form of treatment. The most effective "therapies" follow the same methods as you would use to train a dog, nothing but pure operant conditioning. If you can actually use language and some forms of social pressure, that puts the condition in an entirely new ballpark - IMO.


but the mere fact that you made the statement originally is. . . astounding to me.

I honestly didn't mean it as all that offensive. In hindsight, I can see I aught not have said it, but meant it more or less literally, not (deliberately) as a slur. Pogo even validated that point, if not even remotely to support me - Though he doesn't want sympathy or pity, his(?) condition has caused him nothing but problems.

That said, I have no wish to offend him about it, so meant my apology sincerely.
posted by pla at 5:49 PM on February 24, 2010

The typical high functioning male, if he is lucky, finds a secure post in a university where he can use his exceptional powers for academic study, shunning most social contact as the "eccentric professor", and relaxing at home with his train set in the attic.

That was the point I stopped reading the article, because: fuck you. That doesn't describe my son, or any of the hundreds of other kids at his school (a charter school for autistic children that I am eternally grateful to have him enrolled in). The whole idea of the idiot-savant just pisses me the hell off, and I seriously wish that Rain Man had never been made, because the general public seems to think equate "autistic" with "magical genius with no social skills". I love my son dearly, and he is funny and affectionate and sensitive. And every few minutes he asks to go to Wal Mart so he can get crayons. And ever weekend he wants to go to the Magic Kingdom so he can ride Snow White's Scary Adventures (he's been on it more than 3,000 times now). And if you leave him alone with a box of crayons he will peel all the paper off all of the crayons and eat it. He has no "exceptional powers", he is just a sixteen year old boy who has a severe neurological impairment that will almost certainly prevent him from ever living on his own and caring for himself.
posted by Lokheed at 6:09 PM on February 24, 2010 [1 favorite]

I also consider it counterproductive as far as treatment goes - What I consider "real" autistics almost completely fail to respond to any form of treatment. The most effective "therapies" follow the same methods as you would use to train a dog, nothing but pure operant conditioning. If you can actually use language and some forms of social pressure, that puts the condition in an entirely new ballpark - IMO.


This is complete nonsense. There are children who meet full criteria for autism and move along the spectrum towards Asperger's-- Temple Grandin, for example. As a child, she was pretty much classic autistic-- but she was given intensive personalized attention by her mother who simply refused to give up. Most parents cannot do that because of work, etc.-- and many kids have cases that are simply too severe to be reachable. So this is not to say that classic autistic kids can *all* achieve what she did and if they don't, it's their parents fault.

It is to say that lots of what is "wrong" in many cases of autism is secondary to problems like sensory overload, sensory fluctuations and lack of exposure to social experiences because of behaviors that develop as ways of coping with those things. If you are sitting in a corner rocking, you aren't going to be learning to read social cues and if sensory stuff is bad enough, you might not even *understand* that language is communication because the signal you are receiving is so intermittent and so noisy. If this happens during the 'sensitive period' for language development between age 0-4, learning language becomes
much, much more difficult. It's basically like what happens to a kid who is raised without anyone speaking to them.

When you figure out which sensory experiences are painful to a child and mitigate them and work intensively to open some channel of communication, you *can* help *some* kids-- and it requires a lot more than classic conditioning. The earlier you start, however, the greater the chances are of making severe autism into milder forms because you are reaching the child before the sensitive periods for language and perhaps some social development aspects have passed.

If a child is locked in a closet from 0-2, with no language exposure, but then given intensive speech therapy and love, her odds of being pretty close to normal are decent. If she's in the closet till 5, however, some aspects of grammar may never be learnable. Brain development requires specific experiences at particular times-- miss those times and while learning is not impossible, it requires so much more repetition that it may well be.

Early experience can literally change the course of brain development-- for both neurotypical and autistic kids. And, indeed, you can make a neurotypical child appear autistic simply by locking him in a closet from 0-5: these children will typically rock, have repetitive behaviors, avoid touch, be oversensitive, have intense tantrums and avoid eye contact.

That, unfortunately, is how parents originally came to be blamed for autism-- but the similarities are not due to underlying wiring differences, but due to how trauma and missing developmental experience affects the developing brain and how sensory overload can make ordinary experience traumatic for some and how responses to perceived traumatic experience-- whether due to sensory overload or neglect-- look similar.

Again, I want to stress that this doesn't mean all autistic children are reachable this way-- simply that early intervention can make a remarkable difference that literally changes the course of development for some kids.
posted by Maias at 6:35 PM on February 24, 2010 [3 favorites]

This is the kind of article about mental illness that is rife with overly general blanket descriptions of qualities that could apply to almost anyone and then lumping them together under one diagnosis. Why do I say this? Because this article made me think I have female autism.
posted by tehloki at 3:27 AM on February 25, 2010

It's called a spectrum disorder because people's symptoms are highly individualized. Sorta like how a cold that you get and a cold that I get may give us different symptoms. So, yeah, the definition is a little broad, and it's entirely possible there are several causes or contributing factors. It's also entirely possible that some are misdiagnosed. This doesn't diminish the impact or the repercussions for anyone, and it should be motivation to keep improving things.

It's worth noting that I think it's a physical disorder - a flaw in neurological connectivity. But our ability to assess brain activity is extraordinarily limited by the tools we have (EEG, fMRI, etc.) and by how little we truly understand about brain development. The lack of a definitive test is troubling, but we don't have definitive tests for many afflictions. Our understanding of autism is state of the art - it's just that the state of the art sucks. I'm confident that we will not have a good understanding of the autistic brain as compared to a "typical" one for a very long time.

But a lack of understanding as to cause, and it being a diagnosis of exclusion do not make the problems that someone who has autism any less profound. For me, the diagnosis wasn't and isn't important except that it made it easier to get proper treatment. Treatment that made me far more functional in society than I otherwise would have been. I'm sure it's the same for others.

I think that it makes sense that autism in girls will have different symptoms and expressions. As a boy who was sort of a quiet loner who didn't interact well with others - well, this was considered normal(ish) behavior. But for a girl, the rules are different - whatever the reason - and so I think they will suffer differently. I could be wrong, but it seems to make sense.

To be clear - I have lots of social problems, most of which are rooted in some sort of anxiety or another. I have to make myself make eye contact - it requires actual physical thought and effort. I have to avoid my natural hyper-literalism. Just this morning my wife said "I'm going to jump in the shower" and honest to god, my first thought was "be careful, you could slip". I have to be very consciously aware of my facial expressions - if I am not, they only rarely match either my mood or my thought pattern. I can't read expressions at all, most of the time, and often have to guess as to what people are thinking based on that. And so on. This is social acumen, and I am missing it.

I also think that early intervention and therapy is key. As a small child, I was thought to have a speech/learning disability (heh!) and so I got lots of phonics and other language training. I think that helped tremendously later on. It's unfortunate that I wasn't more accurately diagnosed - or rather, more accurately treated, and that therapies discontinued as I got into to school and excelled.

All of the above said, the notion that I, or anyone, need to justify my diagnosis to anyone is beyond irritating. When the kids would pick on me in school, the response from teachers and administrators was that I needed to learn to not antagonize them. I needed to learn to respond correctly. They were sort of right, but it's not like they took the time to teach me. I'm a little sensitive to this whole "blame the victim" shtick. It's a bullshit line of reasoning from start to finish.

Don't get me wrong. I needed help to avoid the mistakes I was making and I didn't get it. Things went poorly for me and that messed me up for a long time. I'm sorry that it happened like that, but few educations are cost free. I have owned and learned from the mistakes that I made. A goodly amount of my progress came from my own efforts and introspection. Still, I suffered needlessly.

I'm happy to share my experiences if means it might help someone else. I am not, however, responsible for your education, and this is already too long. I'm sort of sorry that I responded so harshly earlier - but only so much, because, even with the apology, it was stupid thing to say.
posted by Pogo_Fuzzybutt at 5:44 AM on February 25, 2010 [4 favorites]