Simon Baron-Cohen, a world authority on Asperger's and the father of Borat, had a column in the Times this week on the decision to remove the diagnosis from the next edition of the APA manual. Cohen argues for caution. He says that psychiatry has not been able to achieve the certainty and precision of other sciences, and there's too much we don't know to rush into a hasty decision that could have serious affects on individuals.
As a parent of a child with a neurological disorder, I've become an armchair psychiatrist. Thanks to the Internet and my own little case study, I can spot a disorder a mile away. It is awfully hard though to make clear lines between ADHD, Asperger's, apraxia, PDD, SID, and all the other labels. My kid doesn't fall neatly into any one category. He's a little bit of this and a little bit of that. At one time or another, he's had all of those labels. The closest label that describes Ian's brand of disorder is hyperlexia, which isn't a recognized psychiatric condition.
These terms also do a lousy job of describing levels of functionality. I've met kids with an Aspie diagnosis that are less functional than kids with a PDD diagnosis.
One can be neurologically different in so many ways that the labels become meaningless, except for the purposes of self-identity and of forcing school districts to provide services. Either more categories need to be made or all the categories should be put under the umbrella term of Neurological Difference. I would be happy to lose the word "autism" entirely.
Apt. 11d 
To defend the DSM a bit, the diagnosis part is Axis I of a five-part system. While there is a relationship between functioning and diagnosis, the relationship is known to be weak for most diagnoses. There is supposed to be a separate functioning measure in Axis V.
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“He says that psychiatry has not been able to achieve the certainty and precision of other sciences, and there’s too much we don’t know to rush into a hasty decision that could have serious affects on individuals.”
There are a lot of people who are happy to self-identify as “Aspie” who wouldn’t so happily identify themselves as autistic. Asperger’s is definitely a social category, if not a psychiatric one. I wouldn’t throw that brand away.
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Hey, I’ve learned something — I never knew that Simon Baron-Cohen was Borat’s dad.
I’ve been suspicious of the DSM IV categories since I spent a summer at a fairly naive 20 trying to read through psychological reports of children finding “classic” cases of dyslexia. As with many of the disorders, there is, somewhere in history, a “classic” case (the dyslexia report is on an individual from the 19th century who is functionally typical in every way, except that he could no longer read after a brain injury). But, in practice, the disorders are freqeuntly messy in definition (dyslexia isn’t a DSM IV diagnosis, though language disorders of various forms are).
I don’t think, though, that a category of “Neurological Difference” can work, because, the point of these diagnosis is to determine who needs help and intervention. That requires us to determine some kind of bright line (i.e classification, in technical terms) to divide the continuum. We can make it fuzzy (i.e. try different interventions and continue with the ones that work) and that might help some. However, we’re still stuck trying to figure out who we just let be, and who we try to “fix” and how much scope and effort we put into the intervention. Perhaps the different subcategories (dyspraxia/apraxia/autism/aspergers all have DSM IV definitions, SID, dyslexia, hyperlexia don’t).
I think the reconsideration of the Autism, PDD-NOS, Asperger’s classifications is wise, but because the differential diagnosis for those appears to be too dependent on developmental markers (i.e. Autism & Aspergers are separated by language delay. PDD-NOS the makers for autism or asperger’s aren’t met, by logical exclusion, I think that means no language delay but low IQ, but I know it’s not always used that way, and as others has pointed out, how do you measure IQ in non-compliant children, not impossible, but clearly prone to great variability?).
But, I don’t think that all the DSM IV categories could be collapsed into “neurological difference” (though many are indeed neurological differences).
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Sorry for the typos. Can I blame neurological differences? I think they are responsible, to some extent.
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One nice thing on the existing literature on Asperger’s is that it devotes a lot of attention to the strengths associated with Asperger’s: focus, persistence, honesty, loyalty, detail-mindedness, love of knowledge for its own sake, etc. Those positive traits aren’t accidental, but are in fact the positive aspect of less attractive features.
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I like the classification of behaviors and “learning deficits” (like frustration tolerance, perseveration, communication difficulty, etc.) that Ross Greene uses in his new book (“Lost at School”) – as he points out, the problems (and some of the solutions) are the same regardless of the diagnosis.
I’ve also been fascinated by the overlap between my son’s OCD and tics vs. Asperger’s Syndrome. Telling if something is a tic vs. a compulsion vs. a stim is often not easy!
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Simon is Sascha’s cousin. I believe.
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“Those positive traits aren’t accidental, but are in fact the positive aspect of less attractive features.”
I really believe this, and it’s part of what worries me about a catch-all definition that could potentially group together differences that *should* result in intervention, and ones that shouldn’t, and further more. Further compounding the problem is that some interventions might disrupt the less attractive features (desirable) along with the more attractive ones (less desirable).
The situation in which I see this most clearly is in attempts to get children to disrupt their attention/interest in areas of focal interest. Yeah, kids have to learn to talk about what their listener wants to hear, but one solution to that problem is to try to find listeners who want to hear what you want to talk about (rather than changing what you talk about).
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Wendy’s right — at least according to the wisdom of Wikipedia. (Besides, the photos of Simon suggest he’s around the same age as Sacha).
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One more thing. Although I don’t have children in the spectrum and don’t know too much about the different neurological disorders, I agree with you that “Neurological Difference” sounds much better than autism and is a more encompassing term.
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Second, science hasn’t had a proper chance to test if there is a biological difference between Asperger syndrome and classic autism. My colleagues and I recently published the first candidate gene study of Asperger syndrome, which identified 14 genes associated with the condition.
The first sentence seems like a pretty good reason to eliminate the distinction, not maintain it. And the second makes me think Mr. B-C is writing in order to protect the value of his own personal research. If you are studying the differences between Autism and Aspergers, it probably helps your funding if Aspergers “exists.”
We are surviving in a world where “neurotic” is relegated to Woody Allen movies and “manic depression” only exists on your Jimmi Hendrix Greatest Hits album. We can muddle along without Aspergers, too, if it is replaced with categories that will cover all of the people who need intervention. If the division isn’t scientifically warranted, I understand, but do not agree that we should to take into account the opinions of people who don’t “want” to be in another category.
Maybe this is an off-the-wall scientific comparison, but the argument save Aspergers reminds me a lot of the uproar to save Pluto when it was getting de-Planetized.
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S B-C also thinks that the reason women do less well in the academy and the board-room is best explained by innate difference in men’s and women’s brains. There is, to say the least, some pretty big leaps of logic in his thinking. I’m not sure I’d give too much credence to anything he says.
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Well, I thik Baron-Cohen is leaving out the possibility that biological distinctions between Apergers & Autism will be found.
In analogy to Pluto, the astronomers decided that there *was* a valid definition of planet, but only if they excluded Pluto. Combining Aspergers & Autism would be kind of like deciding that if Pluto needs to be included in the definition of planet, a lot of other things did as well. In considering the two possibilities, they decided to exclude Pluto, rather than include the multiplicity of planetoids.
In the Aspergers/Autism differentiation, they’re thinking about including them, and thus, including all the planetoids into the Autism definition. I don’t think the comparison is off-the-wall, but the scientific change in taxonomy (i.e. categorical definition, and whether you broaden or narrow the category, and the effect it might have on outliers) was considered differently in the two cases. If we stop differentiating, will people who currently have Asperger’s diagnoses (real ones, as opposed to self-diagnosis) loose their diagnoses, or will they get Autism diagnoses? You can’t really tell, and a lot will depend on how the disorder is defined.
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I live in the grey area of the spectrum. Ian is in class for kids in that grey area, and everyone has different needs. Some need behavior therapy, others OT, PT, speech, social skills, or all of the above. Some are very smart and others have cognitive challenges. Most will be mainstreamed at some point. A couple, like Ian, have unusual talents that could be honed to make them very useful members of society. There is no label that adequately describes any one of those kids.
I don’t like the use of asperger’s to denote giftedness combined with dysfunction. But I have a fridge-emergency chore to deal with, so I cant’ elaborate right now.
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“I understand, but do not agree that we should to take into account the opinions of people who don’t “want” to be in another category.”
The social factor is important. It doesn’t matter that much if Pluto is de-planetized–it won’t mean that Pluto won’t get appropriate professional help. On the other hand, Asperger’s is at least currently an acceptable diagnosis in a way that autism isn’t. A lot of parents who aren’t familiar with the territory are going to say “no, my kid isn’t autistic, la, la, la” and cover their ears if the half-way house of Asperger’s category is eliminated. That could change, but caution is in order.
“S B-C also thinks that the reason women do less well in the academy and the board-room is best explained by innate difference in men’s and women’s brains. There is, to say the least, some pretty big leaps of logic in his thinking. I’m not sure I’d give too much credence to anything he says.”
It’s not PC, but I think SBC is on to something. My husband is a fairly successful academic, and this sort of single-mindedness (focus on a single problem, don’t shave, don’t shower, don’t eat, work, work, work), coupled with being a smart guy, has made him a very effective researcher.
Obviously, there are autistic spectrum girls and there are very interesting differences between Asperger girls and boys (Wendy and I have been blogging a book called Different Minds that addresses gender differences in giftedness, AD/HD, and Asperger’s). But I’d offer as evidence for SBC’s gender speculations the fact that our local college autism center runs 8 social skills groups, and 7 of those are all boys.
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“I don’t like the use of asperger’s to denote giftedness combined with dysfunction.”
Well, it’s not, as a psychiatric/neurological diagnosis. Saying that behaviors associated with autism (Amy’s list) may have both positive and negative consequences is not to make statement about a relationship between asperger’s and high intelligence (if that’s what ‘giftedness’ means in your context). I believe (and it’s a research interest of mine) that the neurological atypicalities that underlie some Asperger’s symptoms produce both positive and negative human behaviors.
I think that the usefulness of the diagnostic criteria cannot be judged by expecting any label to “adequately describe any one of those kids.” To take an extreme example, Downs is a very clear diagnosis, but that doesn’t change the fact that children with Downs are not all alike, and that their Downs label does not “adequately describe them.” There are huge differences among different children with that extra chromosome, even in purely physiological disorders like heart malfunctions. I think that’s a bane of developmental disorders, that the way that they express can be significantly different, even when they have a common genetic (i.e. coding) origin.
That leads us to the question of what the benefit of a diagnostic label might be. I’m not sure, and I think that’s the way to approach the problem. A Downs diagnosis, very easy to make, gives one a series of health issues to consider going into the future. It doesn’t predict intellectual development or cognitive outcomes. Categorical distinctions are useful to scientists, because they provide a means for trying to look for underlying biological differences (i.e. Downs needed to be identified as a syndrome before its genetic original was discovered — we have not reached the stage where genes lead us in the other direction, mostly).
Are diagnoses useful for treatment? And if so, which ones?
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“(Wendy and I have been blogging a book called Different Minds that addresses gender differences in giftedness, AD/HD, and Asperger’s)”
Which I will eventually get back to. Last day of classes for the term here, so I’ve been busier than usual.
I still think there is good reason to think socialization is a major issue in gender differences. Look at this info:
http://well.blogs.nytimes.com/2009/11/12/men-more-likely-to-leave-spouse-with-cancer/?hp
Is that really explained by gender differences? Are men really inherently that morally bankrupt? Or have they been allowed to be or socialized to be?
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Are men really inherently that morally bankrupt?
Men are inherently morally “subprime.” We have to be socialized to get to backrupt.
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“Wendy’s right — at least according to the wisdom of Wikipedia. (Besides, the photos of Simon suggest he’s around the same age as Sacha).”
Can we just say that they’re on the relative spectrum and leave it at that?
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Wendy,
Which chapters do you want to do? There are still 7, 8 and 9.
I think gender socialization is complicated. On the one hand, girls normally undergo more advanced social training at home and from other girls at school than boys do, so maybe that’s where the lower number of girls presenting with Asperger’s comes from. On the other hand, girls face a much more challenging social environment. Girl social skills are harder to master than boy social skills.
I didn’t read the cancer story (must serve lunch!), but I think we should expect that inherent gender differences would factor in along with socialization. Empathy is a problem in Asperger world. The cancer thing reminds me of a rather depressing story from the Asperger’s chapter in John Ratey’s and Catherine Johnson’s book Shadow Syndromes (that’s the same CJ who does kitchentablemath.blogspot.com and has co-authored with Temple Grandin). Susan has a dislocated shoulder:
“They sent me home that night…and I was in shock. And Dan did not appear to have any perception that I had been severely injured…Then the next morning Dan is angry and agitated because he has to take off work and make arrangements with highway patrol and insurance. I physically cannot move and Dan keeps handing me the telephone. “You do it,” he keeps saying, “you take care of it, Susan, because I don’t know how to talk to the insurance agent.”…I couldn’t cut my meat because of my injury, the food would fly off the plate. And Dan would just keep eating; he didn’t perceive what was going on.”
As I said, pretty depressing. You can imagine how well Dan (or even a less autistic individual) would deal with his wife having cancer.
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“Are men really inherently that morally bankrupt?”
I am quite sure that this commentator, presented with a study which recited the raw statistical facts about levels of black and white criminality, would not respond with comment about the moral bankruptcy of black people. The article from the Times doesn’t include any detail (even the minor detail about which partner sought the divorce in each case) which would permit any sort of intelligent conclusion. For example, it is perfectly plausible, given the limited facts, that women who receive cancer diagnoses decide to spend their remaining time on earth free of unhappy marriages, whereas men in that situation stay in unhappy marriages so that their spouses can receive the tax and probate benefits of being married at death.
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y81, the reason that particular study jumped out at me right now is because a friend is going through a horrible time with breast cancer and a difficult husband sounding very much like the ones referred to in the article.
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Oh! I must grab the “Different Minds” and give that a read. Thanks for bringing that to my attention!
As I’ve said before, my daughter has autism but has been various diagnosed as PDD-NOS, Autistic and with Asperger’s. She’s still the same person with the same issues and the same blatantly obvious needs, whatever label you put upon her. Some people are trying to get her classified as Asperger’s — I don’t really see why since she would still need the same supports and be educated in the same ASD classroom in our school system.
Honestly?, I feel that giving my daughter the diagnosis of Asperger’s would invite some people and service providers to downgrade the amount of attention and focus that she needs in order to be able to succeed.
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” For example, it is perfectly plausible, given the limited facts, that women who receive cancer diagnoses decide to spend their remaining time on earth free of unhappy marriages, whereas men in that situation stay in unhappy marriages so that their spouses can receive the tax and probate benefits of being married at death.”
Yeah, right. If so, the women are choosing significantly worse clinical outcomes over staying in their unhappy marriages. Separated patients fared less well on all the clinical measures in the population.
In the original study, the authors find a correlation with length of marriage, and argue that perhaps women “bond” and thus take on the care-taking role in a relationship more quickly than men. But, I’d have liked to see an analysis of the economic variables — one can imagine, for example, that even sick men were still primary wage earners (or had disability insurance) while the sick women had no economic value (once they couldn’t perform their care-taking duties).
I’m struck by the size of the effect (basically nearly all the divorces in the sample occurred when a healthy man divorced a sick spouse, ala Newt Gingrich.). Men being jerks may be a factor, but my first suspicion would be a differing economic consequence, reflecting the skew in economic power between men and women. I’m guessing that if they’d looked at it, they’d find a correlation with income, with the lower earning spouse being less likely to divorce a sick higher earning spouse.
I also think a lot of behavioral differences can be explained by the asymmetry between men and women to form new romantic relationships as they age.
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Yeah, but Wendy, if you had a white friend who had been raped by a black man, I bet you wouldn’t start sounding like Jared Taylor or even Steve Sailer. Just a guess.
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Can we not start the ‘ways in which men are unfairly maligned’ thing? I know it happens, but the thing I enjoy most about being a white male is not having to feel that being a “white male” is some kind of a group identity that I have to defend. That and the fact that the cashiers at Target never think I’m shoplifting when the beeper thing goes off as a I exit.
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