Whose Planet Is It Anyway?

Monday, September 21, 2009

Cultural Symptoms

Over the weekend, I got into a discussion about whether a scientifically based argument could be made to convince researchers and other professionals not to use disease-oriented language like "symptoms" in discussing autism. Although I have seen several articles that take the approach of citing research studies that show autistics to have superior cognitive and perceptual abilities in some respects, and then going on to argue that it does not make sense to describe superior abilities as symptoms, I think that's a dubious approach because identifying superior abilities is not a scientific way of determining whether or not something is a disease or disorder. Rather, it depends on how society values the particular set of abilities being measured, which is based on the cultural expectations of the majority population. If autistics were in the majority, for instance, it's likely that written language would be valued more highly than speech, and being chatty might be labeled a symptom of a disorder.

Ultimately, whether or not something is a disease or disorder isn't a matter of scientific fact, but is instead a social value judgment on the desirability of the characteristics at issue. In the book Unstrange Minds, cultural anthropologist Roy Richard Grinker makes this point quite clearly (page 11) when he states that "autism, like all disorders, does not exist outside of culture. It is culture that sees something as abnormal or wrong, names it, and does something about it..."

Throughout history, diseases have been defined as a matter of popular consensus. Often, as with cancer and influenza, it was based on simply observing that people were dying or in serious pain. In other instances, cultural beliefs led to the popular acceptance of such things as demonic possession and witches' curses. But although modern medical science has studied many conditions in great detail, identifying their particular characteristics to an extent unimaginable in more primitive times, the underlying determination of whether or not something is a disease is no less a cultural one.

So there's really no way to prove by scientific means that autism is, or is not, a disease or disorder. The argument against using language based in the disease model is fundamentally one of ethics: Should a group of people be labeled as disordered if they themselves do not agree with that characterization? This is the same argument made a few decades ago by gay rights activists who successfully argued against the medicalization of homosexuality, and society ought to respond to it in the same way.

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37 Comments:

  • From Wikipedia: “A symptom ... is a departure from normal function or feeling which is noticed by a patient, indicating the presence of disease or abnormality. A symptom is subjective, observed by the patient, and not measured.”

    also, “Symptom versus sign

    “A symptom can more simply be defined as any feature which is noticed by the patient. A sign is noticed by other people. It is not necessarily the nature of the sign or symptom which defines it, but who observes it.

    “A feature might be sign or a symptom, or both, depending on the observer(s). For example, a skin rash may be noticed by either a healthcare professional as a sign, or by the patient as a symptom. When it is noticed by both, then the feature is both a sign and a symptom.

    “Some features, such as pain, can only be symptoms, because they cannot be directly observed by other people. Other features can only be signs, such as a blood cell count measured in a medical laboratory.”

    So something is only a “symptom” of autism if autistic people complain about it. (Being bullied comes to mind, as does feeling overwhelmed by stimuli.)

    A “sign” might be something like not making eye contact. Autistics don’t complain about not enjoying eye contact, but NTs do [complain that that autistics don’t].

    Having superior pattern-detection abilities would be a feature, possibly a sign. But it’s not a symptom if it doesn’t bother you.

    By Blogger Alison Cummins, at 4:11 PM  

  • Oops: wikipedia link above:
    http://en.wikipedia.org/wiki/Symptom

    By Blogger Alison Cummins, at 4:12 PM  

  • So kind of like how a group of people claim they are a community, they are, by definition, a community? One is only disordered if one says so?


    Interesting. I have admitted that I have difficulties that are disabling, but I have never considered myself diseased or disordered, figuring it was a matter of perspectives and social norms.

    By Blogger Corina Becker, at 4:47 PM  

  • I certainly don't have any "disease", (unless you count bronchitis, which is getting better), and I never cared for the term "disorder", as it implies a psychiatric illness, which doesn't apply. What I do have is a lot of autistic/Asperger traits, some of which might be described in physical terms, but most of which are experienced only in the realm of social terms. They used to be a problem before I understood autism, but now, not so much. Hardly any. I'm happy with myself.

    By Blogger Clay, at 6:16 PM  

  • The DSM V PDD committee suggested having a single spectrum from Kanner's all the way to Broader Autistic Phenotype, and mopping up the stragglers with Autistic Spectrum Disorder - Residual Features...

    We are all autistic now.

    Getting a diagnosis late in life is to suddenly leave the human race and discover a whole new universe of the Misery of Other People.

    I remember coming home after seeing Professor Double Barrelled, who delivered the news of his diagnosis, much like a midwife presenting a baby after a particularly long confinement, and thinking all the Good Things in my life (eg a library of obscure mathematics books, reading quantum mechanics textbooks for fun and my deep seated sense of Duty that compelled me to tell people in High Places to fuck off) had been turned into symptoms of a disorder.

    If I'd know what the next decade of living with the diagnosis would mean, I think I would've spontaneously exploded in Maxine Aston's knicker draw.

    "L'enfer, c'est les autres" cannot have been written by a Neurotypical.

    I despair. They really do need curing.

    By Blogger Socrates, at 6:31 PM  

  • Alison Cummins said:

    "So something is only a “symptom” of autism if autistic people complain about it."

    Since most treatments for symptoms of mind abnormality are based on how our actions affect others, most of our complaints are based on what we are taught to dislike about ourselves.

    Treating any type of behavior that is unacceptable by societal standards has it's main objective as aiding the public so they can better tolerate us or to aid the public in feeling/being more safe and comfortable.

    Scientists involvement in treating thought patterns/behavior is based on vague observations and yet the normalizing/conforming treatments that people want to justify by claiming they are scientific has more to do with subduing or restraining the client/patient than aiding them with a better life.

    By Blogger Ed, at 7:14 PM  

  • If I'd know what the next decade of living with the diagnosis would mean, I think I would've spontaneously exploded in Maxine Aston's knicker draw.

    *coughs and splutters in laughter*

    I'm fighting off a cold which is why that didn't just get a ROTFLMAO! You're a worry, Harry! Said with tongue in cheek.

    The thing about the idea of a "symptom". It's all about trying to label the Autistic Spectrum as abnormal. We don't need that, especially for us Aspies who have something to offer the community.

    I don't mind "symptom" however if it describes a side effect - like being bullied, or being denied a job. There's also the social issues (which includes the NT world's view of eye contact).

    "Trait" is a good word. "Sign" is by definition almost the same thing. "Symptom" from the personalised viewpoint adds to the misrepresentation of the condition as a disease. It needs to stop.

    By Blogger Timelord, at 7:39 PM  

  • Like Clay, I have traits. If I'm going to use disorder at all, I'll reserve it for real problems, like lousy auditory processing and mild face blindness. But, considering that I've learned to work my way around them, they really need another word.

    By Blogger Catana/Sylvie Mac, at 8:01 PM  

  • I added this to my blog yesteday, to the right side where it will stay up where it can be seen rather than fading away:

    The Problem with Mental Disorders

    The problem with mental "disorders" that are diagnosed solely on behavioral criteria is that these disorders are socially derived constructs.

    It doesn't mean that there isn't a difference from the perceived norm; it means that as societal norms shift, the socially constructed disorders shift and change.

    Campbell wrote about schizophrenia that in cultures that revere some of the schizophrenic experiences as shamanic experiences, there is not a stigma associated with the schizophrenic behaviors.

    This leads me to my point: where behavior is labeled as socially deviant simply because it is different, there is the potential to change the societal norm by applying pressure to society.

    -----

    How nice to know that I am not the only one who grows increasingly tired use of disease/disorder/symptoms model of autism.

    Psychology's tendency is towards labeling everything, which in and of itself is not a bad thing (a bunch of folks needing to systematize and organize behavior -- huh!); the unfortunate consequence of having said behaviors/traits/differences medicalized into deviance is not acceptable.

    We can be descriptive without being pejorative. It will take considerable fomenting from the people being labeled and categorized to insist that the inaccurate disorder/dysfunction/disease model is removed.

    Everytime I read one of the AoA parents insisting that their autistic children are sick children because they have autism, I get seriously perturbed. No, perhaps their child is physically ill, but that isn't autism.

    And there is nothing wrong with being autistic. There is nothing deviant about autism. I'm tired of society wanting to look at my children and judge them as lacking or deficient. They are not.

    As long as there are parents out there promulgating a distorted and woefully inaccurate presentation of what autism is, as long as these parents are shouting about what autism is taking from them, the challenge for acceptance, appreciation and assistance is made all the harder. Perhaps with enough time and effort, standing up against such bunk will win the day. I hope so.

    By Blogger KWombles, at 10:39 PM  

  • Astute comments by Alison and Ed re: the specifics. As a side-note, some around these parts began trying to educate the '@0@ parents' a decade ago (in their first name/incarnation & all that followed). Although there is certainly something to be said for speaking against being called 'poisoned' and such (when one is clearly not), it's my contention that it is no longer quite the productive form of advocacy that it once was. For past history, see Ms Seidel's Neurodiversity blog and the (now-retired) Autism Diva blog, for stellar examples.

    By Anonymous Anonymous, at 11:35 PM  

  • Anonymous said:
    "Although there is certainly something to be said for speaking against being called 'poisoned' and such (when one is clearly not),

    Not only 'poisoned', but I've seen somewhere children being referred to as being 'infected' with autism. Now that really made my blood boil! There's no basis for such an ignorant statement.

    By Blogger Clay, at 1:20 AM  

  • "Psychology's tendency is towards labeling everything, which in and of itself is not a bad thing (a bunch of folks needing to systematize and organize behavior -- huh!); the unfortunate consequence of having said behaviors/traits/differences medicalized into deviance is not acceptable."

    It's not psychology that does the labelling: it's medicine. DSM is a publication of the American Psychiatric Association, which is an association of medical practitioners, not psychologists (although clinical psychology does tend to follow suit in medicalising things).

    Even I end up having to use labels, but at least I can explain them in terms of difference with a very dynamic quality rather than as monolithic entities that are seen as diseases that stay the same and have no variation except under a medication regime.

    Got my CPSE in educational/organisational psycho-anthropology/ethno-psychology from Jyväskylä University of Applied Sciences, and for it I tackled the topic of autism as a para-cultural phenomenon. They liked my ideas.

    By Blogger David N. Andrews M. Ed. (Distinction), at 2:00 AM  

  • But the psychologists use the DSM, David, and are pivotal in the research being done on the established disorders and the new ones being devised. The tendency is, within the field as a whole, towards labeling and identifying. This is not a necessarily bad thing as this among the goals of psychology: to describe, explain, predict and control. The problem is with assigning deviance.

    Psychology is a vast discipline, though, and many of its branches are veering away from the disordered model of labeling. We need to work harder towards removing the pejoratives associated with various neurotypes.

    By Blogger KWombles, at 8:51 AM  

  • Kim, I think what David is saying is that psychiatrists call the shots when it comes to the content of the DSM. Yes, psychologists follow the DSM (as they should) but they have little say in it's updating from what I can tell.

    I could be wrong about that of course - David may be in a better position to know being a psychologist himself. I might even mention the issue to my own treating psych.

    I use labels, but only because of disability law - which in itself is a label that has considerable power. Both positive (protection) and negative (solidifying whatever label applies as an indicator of "inferiority"). It's why education is so important because it's people power that backs up legislative change. And I believe in educating government first in Australia and the best way to do that is through a Parliamentary enquiry with the right terms of reference.

    By Blogger Timelord, at 9:14 AM  

  • Excerpt from blog posting:

    "Ultimately, whether or not something is a disease or disorder isn't a matter of scientific fact, but is instead a social value judgment on the desirability of the characteristics at issue."

    I'm sorry, I can't agree with this. Are you going to try to tell me that there is no scientific evidence that AIDS is more of a disease than left-handedness? You would have to be a sociologist of science from the 1980s or a French philosopher to believe such nonsense.

    A disease is a departure from normal functioning. One typically suddently gets much sicker than normal after catching AIDS. A lefthander does not have any change in functioning, unless some fool tries to change such person into a righty.

    A disease makes you sick or less functional. A disease typically is an unwanted and unpleasant thing to the person who has it. But many people with AS or lefthandedness are perfectly happy with their condition, which does not take anything away from them that they previously had.

    A disease can kill you, make you disabled or cause parts of your body to drop off. Leprosy is surely no fun. A person with AS may act in an eccentric manner. A person with dementia may also act in an eccentric manner, but the difference is that the AS will not eventually kill the person who has it.

    The other night I was quite concerned at the possibility that people who actually have some type of disease might be being given Asperger syndrome as a diagnosis in Australia. I'd like to know how other people who have AS feel about our condition being associated with conditions such as early-onset dementia. I guess if one truly believes that diseases are nothing more than social constucts, you might have no concerns about this. Why NOT compare autism to cancer? It's all relative! I do have concerns.

    Link to prime time TV show from Australia (the relevant video clip is "Forget Me Not")
    http://au.tv.yahoo.com/sunday-night/

    By Blogger Lili Marlene, at 9:29 AM  

  • Timelord,

    While the DSM may be published by the American Psychiatric Association, psychologists do participate in the revisions of it. :-)



    http://nationalpsychologist.com/articles/art_v18n3_1.htm

    By Blogger KWombles, at 10:17 AM  

  • Lili Marlene wrote:

    "A disease is a departure from normal functioning... A disease makes you sick or less functional... A disease can... make you disabled..."

    There are many professionals who believe that autism does all these things. How would you disprove that belief by means of scientific proof, as opposed to argument from personal perception of happiness with one's condition?

    And of course, not all autistics are happy with their lives, just as there were some unhappy gays who wanted to be "cured" to gain social acceptance when homosexuality was considered a disorder...

    By Blogger abfh, at 10:50 AM  

  • Similar objections have also been raised by the Deaf community to the labeling of deafness as a 'disorder' or 'disability'. Many in the Deaf community argue that they are in fact not disabled, but members of a minority culture (hence the captialization of 'Deaf') with its own language and customs.

    By Anonymous Robert, SLP, at 11:20 AM  

  • Timelord said:
    "We don't need that, especially for us Aspies who have something to offer the community."

    Your attitude sucks.

    By Anonymous Kowalski, at 11:29 AM  

  • "Lili Marlene wrote:

    "A disease is a departure from normal functioning... A disease makes you sick or less functional... A disease can... make you disabled..."

    There are many professionals who believe that autism does all these things. How would you disprove that belief by means of scientific proof, as opposed to argument from personal perception of happiness with one's condition?"

    If you've always been autistic, then autism cannot make you less or more anything than you always were. In contrast, a disease process is a process of change, for the worse. I believe that we are justified in accepting in a positive way many non-normal conditions that are inborn, expressed intergenerationally, and are possibly or probably the result of natural selection. Autists typically have special abilities. There is some evidence that Touretters have some unusual talent. Synaesthetes probably have some type of cognitive advantage. Lefthandedness seems to be associated with high IQ.

    Should we accept Deafness as a valid form of human diversity? A sociologist might say yes. A biologist might say no. There are examples from biology where the loss of a function, where that loss is heritable and genetic, has been selected for by natural selection, presumably because the original function was biologically more trouble than it was worth. Think of eyeless fish in cave lakes. So we can't argue that any creature or person who has inherited a loss of function is necessarily defective or diseased. Evolution makes no value judgements any way. It just selects whatever works at the time. And some thing definitely don't work in some situations.

    By Blogger Lili Marlene, at 11:44 AM  

  • Defining disease as a process does not provide a universal scientific standard because it is culture, not science, that determines what is "for the worse." The natural developmental trajectory of an autistic child can be (and often is) described as a process of change for the worse if the child becomes noticeably more different from his or her non-autistic peers over time, based on the cultural expectation that being indistinguishable from one's peers is of paramount importance. Proponents of early intervention often make such arguments.

    Also, there are plenty of congenital conditions that do not change for the worse but are generally considered to be disorders because they significantly impair functioning, such as cleft lip and palate, for instance. As you point out, Lili Marlene, such value judgments are made by society and not by evolution itself. There's no clear scientific dividing line between conditions such as hereditary deafness, which has given rise to a minority culture, and other conditions that are routinely treated as defects and surgically corrected.

    By Blogger abfh, at 1:14 PM  

  • Timelord said:
    "We don't need that, especially for us Aspies who have something to offer the community."

    Your attitude sucks.


    Kowalski, are you saying we should be labelled as abnormal? If you are then it's your attitude that suck, not mine. That's a great way to invite the intolerance we should be getting rid of.

    If not then please explain your comment.

    Kim, I did say I might be wrong about what I said. I don't know how the APA gets along with psychologists. I do know that there are some psychiatrists who want nothing to do with psychologists - only because those psychiatrists are the quacks who insist on medication for the sake of medication. I've seen it happen and it pissed me right off.

    By Blogger Timelord, at 8:13 PM  

  • Timelord,

    :-) No problem.

    And there is friction between a considerable proportion of psychologists and psychiatrists. Of course, it's not like psyhologists are a monolithic whole, for that matter!

    By Blogger KWombles, at 9:05 PM  

  • "Kim, I did say I might be wrong about what I said. I don't know how the APA gets along with psychologists. I do know that there are some psychiatrists who want nothing to do with psychologists - only because those psychiatrists are the quacks who insist on medication for the sake of medication. I've seen it happen and it pissed me right off."

    Timelord, my mother was put on 10-15 psychiatric drugs by one psychiatrist. My mom's current psychiatrist is worried about this but can't take her off due to potential side effects of trying to take her off. It is fucked up. The man retired to his native country of columbia. If my mom dies of these meds I am suing big time. If it came to that I would need help with that.

    Timelord, you are more right than you think when you say our health care system is a freaking joke.

    By Blogger Cube Demon, at 11:26 PM  

  • "There's no clear scientific dividing line between conditions such as hereditary deafness, which has given rise to a minority culture, and other conditions that are routinely treated as defects and surgically corrected."

    I have argued that there in fact is a scientifically valid way of distinguishing between inborn defects and forms of biological diversity. If there is evidence that the thing is the product of natural selection, then we should show as much respect for the biological feature as the forces of evolution have shown to it. I believe that biologists are able to tell the difference between mutations that have or have not been selected in this way.

    I have never in all my reading come across any serious argument by a biologist that any form of deafness or blindness in humans is the product of natural selection. If you know of any such argument I'd love to know about it. But I have read many arguments that (at least some) autism genes are the product of natural selection. Remember the recent study that found some very common genes to be associated with autism? That's evidence! This isn't a matter of value judgement, it is a matter of scientific categorization.

    Biologists assume with good reason that common genes must have been selected for by natural selection. This is probably why the medicos, to my knowledge, have never advocated negative eugenics for the comparatively common genes that are assocated with auto-immune diseases, which can be very nasty and disabling. We know these genes MUST have an upside. In contrast, medicos DO advocate negative genetics for Down syndrome, a condition that is "due to a random event during the formation of sex cells or pregnancy" and thus CANNOT be the result of natural selection, which works over many generations. This condition is both seriously disabling and is clearly not the result of natural selection. The boffins have scientific justifiaction for arguing that it would not have any hidden benefits, and can be categorized as a disorder.

    "Defining disease as a process does not provide a universal scientific standard because it is culture, not science, that determines what is "for the worse."

    I'd say it's common sense and science that make this type of judgement.

    "The natural developmental trajectory of an autistic child can be (and often is) described as a process of change for the worse if the child becomes noticeably more different from his or her non-autistic peers over time, based on the cultural expectation that being indistinguishable from one's peers is of paramount importance. Proponents of early intervention often make such arguments."

    Well they aren't scientists, far from it. So many early interventions have no scientific evidence base to support them. I'm sure many of these well-meaning ladies don't even understand what a scientist or doctor means by the word "evidence".

    Do you really believe that genuine cases of autism or AS can include noticeable and genuine losses in functioning? I'm not talking about a person experiencing burnout or "nervous breakdown" due to having too much to cope with, or an autist who decides to embrace a life of blissful reclusion and eccentricity after attaining financial security, but a genuine regression in ability. I'll bet there's not one professional expert on autism or AS who would agree with that.

    By Blogger Lili Marlene, at 12:20 AM  

  • I'd still love to know what everyone's thoughts are regarding siblings in a family that includes many cases of early-onset dementia having the diagnosis of "Asperger's autism". It don't sound right to me.

    By Blogger Lili Marlene, at 12:28 AM  

  • Lili, it is right. That goes back to the first recorded note of Autism - youth dementia in 1893. Eugene Bleuler was aware of it before he took the concept up a cul-de-sac with his work on schizophrenia. It took Kanner to put it back on track. And Asperger even though he didn't get credit for his work until 40 odd years later!

    Cube Demon, that's horrible! That reminds me of someone else who I won't name here. By all means - sue the bastard if your mother dies!

    By Blogger Timelord, at 10:18 AM  

  • Lili Marlene, there are some conditions that are the result of natural selection but are detrimental under today's conditions. For example, sickle cell anemia protects against malaria but has no benefits for modern city dwellers. So, whether something came about by natural selection can't be the basis for deciding whether it is a disorder.

    I agree that we ought to be concerned about doctors failing to diagnose real medical conditions because they assume any problems to be caused by autism. And it's not just dementia; there are pediatricians who fail to treat children with serious digestive diseases because they think gut problems are just part of autism.

    Cube Demon, your mother should visit another psychiatrist to get a second opinion about her medications. It might be possible to slowly reduce them one at a time, or at least some of them.

    By Blogger abfh, at 10:38 AM  

  • What I've always found odd is that people try to argue science in regards to other identity politics issues.

    For example, if a study suggests men are different to women neurologically, immediately you'll see some people act as if this might overturn the equality of the sexes, and perhaps the women's rights movement altogether.

    In reality, a scientific finding is just knowledge, and it can be useful in practice in various ways, but it should have no bearing on rights and equality and so forth.

    By Blogger Joseph, at 12:21 PM  

  • ...there are pediatricians who fail to treat children with serious digestive diseases because they think gut problems are just part of autism.

    I can think of one parent who thinks exactly the same way, ABFH!!

    Cube Demon, it might be an idea to start a thread on my forum on the Science and Medical board on the subject of your mother.

    By Blogger Timelord, at 7:18 PM  

  • An interesting point in the context of the so-called Autism "epidemic." Perhaps the reason the number of those diagnosed as being on spectrum is simply because culture is changing its standard for "normal" behavior.

    By Blogger Shadiyah, at 7:56 PM  

  • Come to think of it, perhaps popular media has shaped society's ideas of what is "normal" in the way people think and behave just as much as it has in matters of body image. That would certainly account for a lot.

    By Blogger Shadiyah, at 8:14 PM  

  • Shadiyah - in a roundabout way, that's what changing the DSM represents. That sort of change. More information comes to light - adjustments are made accordingly.

    By Blogger Timelord, at 8:37 AM  

  • "Come to think of it, perhaps popular media has shaped society's ideas of what is "normal" in the way people think and behave just as much as it has in matters of body image. That would certainly account for a lot."

    Maybe Marshall was right when he said "The Medium is the Message"

    By Blogger Cube Demon, at 6:33 PM  

  • ABFH wrote:

    "Lili Marlene, there are some conditions that are the result of natural selection but are detrimental under today's conditions. For example, sickle cell anemia protects against malaria but has no benefits for modern city dwellers. So, whether something came about by natural selection can't be the basis for deciding whether it is a disorder."

    Not wishing to seem excessively argumentative, but I would say sickle cell amaemia is the disease, while sickle cell trait is generally regarded as a benign condition that provides some protection against malaria. The gene associated with both conditons causes disease when people inherit two copies of it, but can be useful in a heterozygote. Its important to make the distinction between the disease and the gene, and note that costs and benefits can be relative to environmental conditions. One thing that is most unlikely to happen - that natural selection should favour something that is clearly a disease or a disorder.

    Shadiyah wrote:

    "Perhaps the reason the number of those diagnosed as being on spectrum is simply because culture is changing its standard for "normal" behavior."

    True. Showing typically male characteristics, such as being very physically active, being relatively inarticulate, having little interest in talking about personal stuff, and enjoying mental or physical competition are all unfashionable characteristics these days. Everyone is expected to behave like a female these days, even men and little boys. Babies who are not speaking at 8 months are being put on waiting lists to see speech pathologists for babies (truly). So being autistic, with an extreme male brain, is to be society's favourite scapegoat.

    By Blogger Lili Marlene, at 6:24 AM  

  • Thanks for the correction as to sickle cell trait, and no, I don't mind a little arguing. ;)

    I'd say that culture has changed its standard for "normal" behavior so much that it has reached the point of total incoherence...

    By Blogger abfh, at 10:59 AM  

  • Timelord said:
    "If not then please explain your comment."

    Noone should be labelled as abnormal.
    What I meant is your presumption that especially *Aspies* have something to offer the community.
    What about other autistics?
    Why do you think an autistic is somehow superior when they can speak, or have an AS dx?

    PS:
    Sorry for the late reply.

    By Anonymous Kowalski, at 7:24 AM  

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