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    Continued Reflection On Labels And Defining One's Identity: The DSM Should Not Be One's Guide
    By Kim Wombles | November 24th 2012 12:07 PM | 11 comments | Print | E-mail | Track Comments
    About Kim

    Instructor of English and psychology and mother to three on the autism spectrum.

    Writer of the site countering.us (where most of these

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    I feel stuck, stuck in the continued reflection of what DSM labels mean to individuals and how they conceive their identities. Perhaps this is because so much of what I read on the internet in our online community is about identity and labels. It seems many of us are focused on what it means to be autistic and who controls the right to label and define.

    I was going to say that nowhere else in the medical community do you see this war between patients and professionals, but that is not true. Take Morgellons. Please. But it's not just new, unexplained syndromes being bandied about in forums, on blogs, and on facebook; people are desperate for answers and the need to explain any and all symptoms: celiac, chronic lyme disease, PANDAS, and more; they all offer a comforting, clear explanation for the aches, pains, and discomfort that are a common and often unavoidable part of being a living organism with the endless potential for things to go awry.

    Never fear, though. There's always something that can be done, whether it really works or not. There's no shortage of entrepreneurs looking to make a living pandering to an often gullible population. Magnetic bracelets, holographic bracelets, salt crystal lamps, healing energy, quantum healing and more: there is an ever increasing diversity of woo being offered and even mainstream medical establishments, ever interested in making a buck, are jumping on the bandwagon. After all, giving the consumer what he or she wants is the smart business thing to do. Never mind the ethical conundrums of doing no harm.

    Doing no harm. The problem with labels, especially those dealing with the mind, is the power that goes with whoever is in control of labeling, and with that power is the ability to cause significant harm. It's easy to see why consumers are trying to take control of the ability to label themselves and then redefine those labels into positives, as is happening in the autism community. Being viewed as defective, broken, and in need of repair is not an easy label to bear. Being treated by inept professionals who often do more harm than good makes the situation all the worse. A revolution was and is inevitable. I'm not convinced there will be any winners, though.

    The problem with co-opting the labels created by the psychiatric community and then redefining the labels to suit one's own need to establish a clear identity so that one can ideally find other like-minded individuals  is that cacophony is an inevitable result. Multiple people using the same terminologies with different definitions means that cross-talk is the end result. Fragmentation occurs as everyone creates and uses his own personal meanings for the same labels.

    No one's talking about the same thing, and since everyone has his own definition and is his own expert on the label, everyone else is a charlatan and the enemy. The fallacy of false dilemmas appears to be one of humanity's favorites.

    In our community that means that parents insist that their children's autism is nothing like self-advocates' autism, and self-advocates and parents alike berate professionals who claim expertise of autism.

    While there's no shortage of quacks, charlatans, and hucksters in our community, it gets increasingly hard to sort out who is genuine and who is a fraud. How, when everyone is using his own definition, do you even know?

    In the end, what I come back to is what is the benefit of engaging in self-labeling. Finding community and support and acceptance are important tasks: we all need a place to belong, and we often find that place by defining the out-group and common enemies. Nowhere is this more evident than in the autism community where the autism "experts" like Baron-Cohen, Attwood, Siegel, and more are often reviled for their takes on autism. Both parents and individuals on the spectrum take often rightful offense at the ways in which these experts choose to identify and sometimes mock autism.

    Deficit models don't work well for adaptive functioning, and that's what the DSM does: it labels people outside the range of normality by deficiencies, not strengths. And this is where the greatest danger is: in identifying oneself by deficit models.

    In order to gain some measure of control, parents and self-advocates are trying to wrest the control of labeling away from those who view neurological differences in terms of deficits. Self-esteem and self-efficacy for the individuals so labeled almost demand a rejection of the label as a list of deficiencies and the rewriting of the label into a positive personality type.

    As long as we exist within the label and give the label legitimacy, there's not much choice: see it as a negative or rewrite it as a positive. Stepping away from the label entirely means letting go of built in communities created by the use of the label. It's stepping into no-man's land, and it's often a terrifying prospect.

    More of us in the community are doing that, though: suggesting that what is important is not the label, but the characteristics that are in common. We may have an intense, innate need to name things, but we can resist that need to break everything and everyone down to labels. It is only by seeing our common characteristics, our humanity, that we will ever have any hope of finding community over the cacophony that labeling creates.

    Labels do not define me or my husband and they do not define our children. We are individuals with our own strengths and challenges, and appreciating our commonalities and our differences provides a safe space where being uniquely ourselves is not only possible, but expected.

    Comments

    rholley
    Nice to see you back.

    This will take some thought.  In the meantime, an  autumn picture from the Reading University campus:



    Robert H. Olley / Quondam Physics Department / University of Reading / England
    kwombles
    Thanks; it's been an incredibly busy semester--teaching eight sections has sucked up most of my time.
    Gorgeous picture!
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    John Hasenkam
    An autism bod once said: when you've met one autistic you've met one autistic. That's all. Labeling is one dark side of the Halo Effect. Person has quality X, we immediately assume ... . 
    There was a recent news release kicking around that in DSM V they will label nail biting as an OCD. Oh great, so nearly every child will become suspect of being OCD. 

    I am a very eccentric person. During my life I have been labeled as a cyclothyme, social phobic, unipolar depression, depersonalisation, PTSD, by too many "helping hands" who were too quick to label and too slow to think. When mental health professionals take a closer look they decide I'm just bloody strange. 

    Unfortunately too many in the mental health profession equate normal behavior with sanity. One could turn that on its head. While I think the anti-psychiatry crowd are nuts I also think they might teach us something about how a society can become increasingly intolerant of the different and that we should be on guard against that. 

    See labels for what they so often are: linguistic conveniences, not pointers to what is actually happening. 

    Are we labeling people simply for statistical needs. Is there any need to think of "Danny the autistic" in the clinic? I don't think so and suspect it would be better for clinicians to not think of their patients as Danny the - insert label here. Rather, Danny, who displays these behaviors ... . Too much work to think about the individual so choose an easy label instead? That's professional laziness. 

    "While I think the anti-psychiatry crowd are nuts"

    You're in favor of psychiatry then? yet you dispute the labels put on you? You seem like just another person afraid to see psychiatry for what it is, quackery.

    The author wrote in part 1 to this piece "Both young and older adults who identify as autistic, who see themselves through that prism of autism as a neurological, natural difference"...

    This is bullshit. If you think you've got a neurological difference go to a neurologist, get tested, and show me and yourself the results that prove you have neurological problem or difference.

    Autism is a label put on people, for a wide variety of reasons, none of these legitimate provable neurological disease reasons.

    And I'm proud to be anti quackery, and if you label me "nuts" it's nothing that hasn't already been done by other believers in quackery so believe me it's like water off a duck's back.

    Labeling in psychiatry is a special chapter of the "modern" medicine. This only affects people who after receiving the label, do not find believe anyway. Complains one on the cancellation as mentally ill, it means more that he / she has probably not taken the medicine. Consider the labeling a little more general, in the somatic areas of medicine where it rages as terrible, I would like to give an example:

    One day, my mother, then in his early seventies, went to the doctor. She reported very proud that she has lost about five kilograms. She should not have done better. Weight loss (in this case from 77 to 72 kg at a height of about 160 cm) is in fact a label for cancer. Under this label, the doctor sent her to a friend and colleague who has his expensive machine to utilize with bowel examination. During the investigation, the intestine was so badly injured that in an emergency surgery a colostomy had to be laid. The examining physician spoke out: There were adhesions in the intestine, the misfortune was fateful. Well, these adhesions were not quite inescapable, but to the doctors were known. My mother had but twenty years earlier due to a bowel obstruction a twelve-hour bowel surgery to go through. An enormous scar from sternum to groin testifies. The fatal investigation would therefore may never take place, much too risky, it was to expect with near certainty with adhesions! But the label weight loss suspected cancer colonoscopy was enough to justify that serious (as done in common) and dangerous (with a dangerous object executed) injury. Had the doctor not used to label, but treated the whole person in his life story, he could have in the extreme case, order an x-ray contrast examination of the colon. But his buddy has not a X-ray machine, he must utilize, but a device for colonoscopies, which he wants to make money with.

    Well, my mother is doing fine again, she's tough. The double-barreled colostomy was after half a year (a terrible six months, so a colostomy one is quite a stinking mess) to be moved back. And she is happy that she does not have cancer. She keeps the doctor who inflicted misfortune, still a good doctor. This affects the label of equality with God that the medicine ascribes to itself and to which the people in deep religiosity believe. It makes me sick.

    By the way, the weight loss of ten pounds, which led to the suspicion of cancer, had an entirely different reason. My mother is suffering from type II diabetes (which is familiar to us, my grandmother had diabetes and my brother has it too). Therefore she had three to four times a day insulin injections until I gave her an alternative drug (Phytocortal, that is Bellis perennisD5, Chelidonium majus D5, Dioscorea villosa D5; more information under http://www.madinamerica.com/forums/ topic/why-isnt-this-the-smoking-gun/page/7 /? loggedout = true, replie 101). After the treatment with Phytocortal her diabetes was not taking insulin anymore and a small weight loss was the physiological consequence (insulin leads to weight gain).

    And by another way, colorectal cancer is related to poor nutrition such as lung cancer to cigarette smoking. Before the invention of the cigarette during the First World War - they wanted the soldiers in the trenches offer a quick alternative to the cigar - lung cancer was a rare fringe phenomenon. The colorectal cancer risk can be reduced by 95% if one pays attention to a high-fiber diet (ie fruits [an apple a day takes the doctor away] and vegetables five times a day, whole-grain [rye ist the best] bread instead of white bread). Colon cancer is a consequence of the industrial diet. German quackers know this.

    I certainly agree with your assessment about labels being handed out rather than solutions. It's very easy to just slap a label on someone rather than treat individual problems, that's for sure.
    I didn't like the comment "Morgellons. Please."
    I was a perfectly healthy and productive adult without any medical problems for over 50 years. Then, without warning or reason,I was hit with this god awful disease. Morgellons. Please.
    It has destroyed my life. I have lost everything I've worked for. I've lost my job -I'm about to lose my home and there is no hope in sight of anything changing. I'm completely isolated from everyone because, number one, I don't want to risk infecting others, and number two -everyone thinks I'm just crazy. This is not a disease you can see, but you can believe me if you have it, it's very hard to deny. There is no help from the medical community, and then even your friends are no support. If I had cancer they would be helping to look out for me and making sure I was alright. Instead they make comments that they wish they had the old me back, as if I have the ability to make this stop.
    The truth is I would take autism or cancer, or anything -I mean anything over this disease. The isolation, the loss of relationships, the loss of self-sufficiency and pride- coupled with misery and the nightmare that this disease is makes suicide and attractive option. No doctor will help me or anybody like me. My disease does not exist- and even if they wanted to help, there's nothing they can do.
    I'm not doing this to myself and I'm not crazy – or at least I wasn't before the onset of this disease. I have sores all over my body- in places I cannot reach and I have things growing out of those sores that I have no idea What they are or how they got there. All I do know is they are not natural.
    So, while I do appreciate your message about labels, I feel that your editorial was hypocritical; labeling people with Morgellons as a mass hysteria rather than the emerging disease that it is. . I hope that you never have to learn the hard way just how sadly real it is. I also hope you educate yourself on it, if indeed I interpreted your coLol, download the "oh really" app. So stupid, but I'm laughing!mments correctly. If I am overly sensitive And paranoid, I apologize, but believe me -i have to be on the defensive 24/7. As sickening as the disease itself is, the real pain comes from the rejection and loss of everything that used to be your life. It's so much to deal with- the bugs seem almost inconsequential. Sad.
    New diseases happen. And when we take cod genes and mix them with cantaloupe genes and we do this for every product that enters our bodies, and everything in our environment, it's bound to have undesirable consequences. This is one of them. And soon enough it will be undeniable. I look forward to that day.

    vongehr

    More of us in the community are doing that, though: suggesting that what is important is not the label, but the characteristics that are in common.

    Yes, and because they are so important that we need to talk clearly about them, therefore we need well defined labels.

    Labels do not define me or my husband and they do not define our children.
    Labels do not define anything; the definition defines the label.

    If you want to contribute to the "Science2.0" label being suitable, you must come to terms with the utmost importance of labeling and agreed upon operational procedures that lead to measurable distinctions on scales. That many people distort the meaning of the labels is another matter and needs a defending of the proper labels.

    I get the point about deficit-labeling and the (at least as bad) positive rewriting of what is often a deficit at least in terms of ability to socially function if one desires to do so. But you do us (e.g. me as Ass-Burger scale guy) a disservice by attacking the categorizing that can make all the difference in how people can understand the differences between each other better and thus help each other. I want a better and better DSM until every last person can find out where she is relative to the people around her, in terms of all kinds of scales. The use of IQ scale and suchlike, for me for example, is also not to find support communities, but simply to realize, for example, why it is that nobody ever gets what the fuck I am saying. There is nothing like reproducible numbers being out three standard deviations from the average that tells me to very seriously change communication procedures a certain way. Certainly no feel-good blah blah about mutual understanding did ever anything comparable for me.
    John Hasenkam
     The use of IQ scale and suchlike, for me for example, is also not to find support communities, but simply to realize, for example, why it is that nobody ever gets what the fuck I am saying. 


    This recalls to mind something I read a very long time ago. It was about the Myer Briggs profile. Those who score highly on the INTP scale were observed to be the sort of people who when they reach about 40 years of age realise that when many people nodded knowingly about what the INTP was saying actually didn't have a friggin' clue. 


    Sascha's comment about the value of labels is very important. The problem is not the labeling but the significance people attach to labeling. As in my earlier post I have been given many labels by various people but I was never that concerned about it. Rather it encouraged me to advise people to stop playing "Dr. Freud". Knowing what makes you different has very important social implications. Refusing to recognise your difference, to rationalise it away, only makes the difference more difficult to bear. 


    I think part of the issue with labeling is people then feel excluded as a result of a label. I've heard comments from Gays insisting they be regarded as "normal". To wit I reply: no, wait a minute, homosexuality occurs at about 3% of the population, if that makes you normal then nearly everyone is normal because nearly everyone has some characteristic that is occurring at that rate. Which makes the concept "normal" meaningless. I'd be happy with that outcome but am confused as to why Gays insist on being classified as "normal". 
    Perhaps we should first consider labeling theory, and then to arrive at a valuation. A label can only be understood in context. This context imposes a review of the label from which a guideline arises that label over.

    For example, the Nazis gave the Jews a yellow star as a label. The Code of Conduct was: kill them. Take the skin color: black = slave. Or sexuellle orientation: gay, so abnormal. But it is also about another: a white coat, the label of the physician indicates equality with God, absolute authority.

    That's the way fascism works, a primitive, stupid kind of power over people actually free.

    Another form of the label is found in the somatic theory medicine. It is constructing a disease label (high blood pressure) and it will be costly drugs assigned. Unfortunately, the label is wrong. Many people suffer from high blood pressure that does not conform to the definition of the label (idiopathic hypertension). Nevertheless, they are beaten at the cost of universal health insurance with these drugs. The label it prescribes.

    For physicians themselves and their families this is not the case. They themselves are aware of the inadequacy of their own art and it is no wonder that here in Germany, doctors and their families, only about a third as often as the general population need to go to a hospital.

    Incidentally, in the case of high blood pressure, take Rauwolfia Serpentia, an Indian plant that has been well studied and in schizophrenia (in aggressive behavior combined with Hyperforatum, St. John's wort) also bear fruit.

    (please excuse my "google-english")

    kwombles
    Thank you for your response. Labels continue to weigh on my mind. Another commenter, Sascha, made reference to the need for labels, and I've weighed that, too.
    My problem with DSM labels is that they are subjectively arrived at and subjectively applied. There is no operationalization. I have been pondering whether descriptors are the same as labels.

    I don't have a problem with objectively arrived at descriptors/labels. Engaging in the scientific method requires objective standards, labels that are clearly and neatly defined, and the use of descriptors.

    Psychology and certainly psychiatry have a problem with doing the above things. The DSM is proof of that. The way the DSM labels are applied inconsistently is proof of that.
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    We obviously have to go deeper into the theory of labels (this is no google-english, google would shurely make more trouble than offer benefits with such a short set of words an that much amount of commata, but high-school level, let's have a try).

    If you are able to define the correlations between label and a member of a set, able to define a one-to-one relation, nothing is better than a label because you can simplify and make reliable the task to do when you recognize a label (you dont have to think it over, before you act).

    In social and even biological reference, the only way to a reasonable label definition is to define a one-to-one label (mathematically spoken a bijective relation). Every human being is an individual and so you have to construct as many labels as there are individuals to get a bijective relation. This would overstress the capability of any labeling system, because this would drive it to be a clone of the to labeled system.

    But this is not in the willing of a totalitarian system. Totalitarism needs simplification . Symplification means to subsummize a set of states (condense a number of individuals to only one virtual individual, which has lost all individual properties but one, the label, say having the last property "jew " at the holocaust) and relate it to a single label (that would be a surjective relation, many [individuals] to one [label]), which is connected to an advice - kill them.

    This is what medicine does, neglecting the individual properties by subsummizing it to a label.

    Well, that's what I wanted to say. And if Sascha pretends to find labels on humans useful, well, how to prove the color blue to a blind one?