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AVENguy

Changing the DSM

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AVENguy

For background on this, please check out my blog at:

http://asexualunderground.blogspot.com/2008/06/la-mesa.html

Basically, I just talked to a cool lobbyist from the National Center for Transgender Equality who says that we may have a shot at changing the definition of Hyposexual Desire Disorder (HSDD) in the Diagnostic and Statistical Manual (DSM) sometime in the next year or two.

This is a BIG DEAL. The DSM is the book that therapists around the world use to diagnose mental disorders. If we make it harder to diagnose asexuality as a disorder it will go a huge way towards acceptance. I've been looking around, and I can't seem to get a copy of the current definition of HSDD, but the gyst is this:

Hypoactive sexual desire disorder (HSDD) is defined as the persistent or recurrent extreme aversion to, absence of, and avoidance of all, or almost all, genital sexual contact with a sexual partner. HSD becomes a diagnosable disorder when it causes marked distress or interpersonal instability.

This means that, technically speaking, an asexual person who's happy with themselves can't be diagnosed with HSDD, but an asexual person who experiences "distress" can. Treatment usually involves trying to make the patient more sexual.

The committee which talks about this stuff is going to be meeting in a little while to consider revising the definition, and when they do they are required to consult "community advocates." If we come up with a well thought-out critique of HSDD and a good alternative there's a chance it might get listened to.

Here's what I think we need to do:

1) Round up AVEN people who might be able to act as advisers. Anyone with academic credentials, especially in psychology, is probably a perfect candidate, as are people with a track record of involvement in the community.

2) Round up friendly scientists, therapists and grad students who are interested in talking about this issue. To be effective we can't just complain about HSDD, we have to suggest an alternative, and we'll need people with experience in the field to come up with a good one.

3) Have the AVENites and the academics have a civil discussion somewhere (here? some other place on the internet?) and come up with a critique of HSDD and an alternative or five.

4) Have all of the AVENites and all of the academics apply to be advisors, all with similar critiques and alternatives. We should be respectful, but with that many people approaching them about asexuality the subcommittee that's looking at this stuff will have to listen to at least some of us.

Thoughts? I'm in touch with the lobbyist who turned me on to this, who is busy trying to get them to change the definition of gender identity disorder. She's happy to show us the ropes. I can also probably put together a group of sexology students at the Institute for the Advanced Study of Human Sexuality here in SF who can start the discussion about revising HSDD and hopefully give us a way to facilitate it.

Thoughts? Critiques? Volunteers?

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SpirallingSnowy

I'll keep my eyes open for the most recent version of HSDD. Unfortunately i'm not qualified in psych or anything hehe. Id love to help in anyway i can.

**EDIT**

http://www.behavenet.com/capsules/disorder...posexdesdis.htm

A hah! my lurk of years past still exists :)

Thats the DSM IV ( the 1994 edition) criteria for HSDD - it wasnt revised in the 2000 DSM IV - TR.

http://www.behavenet.com/capsules/

Main website that has all sorts of health information. Hope its helpful :)

There is a 2009 draft coming out or so ive read.

http://www.psych.org/dsmv.asp - thats got the plan so far for it

http://www.medicalnewstoday.com/articles/77663.php

Article on "The DSM-V Task Force consists of 27 members, including a chair and vice chair, who collectively represent research scientists from psychiatry and other disciplines, clinical care providers, and consumer and family advocates."

umm... im still looknig for more info....

SS

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jitterbugg

Do we know if this source has the exact same wording and stuff as the DSM? There was a typo, lol. My favorite part by far is "Some couples just aren’t sexually attracted to each other, leading to HSDD in one or both." Wow, not much logic there, right?

I'll definitely do what I can, though I have no high credentials (yet)! The only real experience that I have with all of this kind of stuff has been LGBTQ advocacy, and trying to be all inclusive on a University level.

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Hallucigenia

I don't have any credentials in psychology either, but as far as academics are concerned, might I suggest talking to Tony Bogaert? He has done some of the first contemporary research into asexuality and wrote a published paper arguing that it should not be considered a disorder. The only problem is that he's Canadian which might not be the best thing for the APA.

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Lord Happy Toast

a section of the DSM-IV TR

Google books allows you to look at parts of books online. I think which pages you can look at changes periodically, but right now it is allowing us to look at the sort summary of the diagnosis. From what I've seen online summaries can be more or less accurate (the DSM doesn't tell you about causes because certain causes prevent a diagnosis of HSDDh, requiring some other diagnosis instead.) Anyway, I think pretty much any university or public library should have a copy of the DSM.

In terms of academics, my guess is that Lori Brotto might be the best way to go since she has studied asexuality and has a good amount of research and clinical experience. Bogaert, as cool as he is, may be helpful, but is not trained as a therapist or as an MD. Also, a common misperception of the DSM is that it is related to psychology, which isn't exactly wrong. However, it is done by the American Psychiatric Association, not the American Psychological Association (each refers to itself as the APA and the to the other one as "the other APA.)

Anyway, I would love to help. Has anyone thought of contacting anyone at the Kinsey Institute? They seem to be generally supportive of asexuality, but I don't know if any of us have any contacts there.

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Hallucigenia
Also, a common misperception of the DSM is that it is related to psychology, which isn't exactly wrong. However, it is done by the American Psychiatric Association, not the American Psychological Association (each refers to itself as the APA and the to the other one as "the other APA.)

Oh, that is cool (and confusing). I did not know that.

Anyway, I would love to help. Has anyone thought of contacting anyone at the Kinsey Institute? They seem to be generally supportive of asexuality, but I don't know if any of us have any contacts there.

Nicole Prause and Cynthia Graham from the Kinsey Institute did a study on asexuality in 2007.

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SpirallingSnowy
Individuals with this Sexual Dysfunction disorder experience absent or markedly diminished sexual appetite separate from any other mental disorder.

Diagnostic criteria for 302.71 Hypoactive Sexual Desire Disorder

(cautionary statement)

A. Persistently or recurrently deficient (or absent) sexual fantasies and desire for sexual activity. The judgment of deficiency or absence is made by the clinician, taking into account factors that affect sexual functioning, such as age and the context of the person's life.

B. The disturbance causes marked distress or interpersonal difficulty.

C. The sexual dysfunction is not better accounted for by another Axis I disorder (except another Sexual Dysfunction) and is not due exclusively to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition.

Specify type:

Lifelong Type

Acquired Type

Specify type:

Generalized Type

Situational Type

Specify:

Due to Psychological Factors

Due to Combined Factors

Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, fourth Edition. Copyright 1994 American Psychiatric Association

Thats from the first link i gave. thats the current criteria.

I think we should check up all our research articles on the Wiki and see which of them we can contact about this.....

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endplusone

Wow, this is great!

It seems like the next version (DSM-V) will not be out until 2011 or 2012:

The next edition of the DSM, DSM-V, is not scheduled for publication until 2011 (or later). The APA Division of Research manages the DSM revision process and does not expect to begin forming DSM development workgroups until 2007 or later. More information about the DSM revision process and the current activities in planning for the development of DSM-V are available on the DSM-V Prelude Project Web Site. www.dsm5.org.

Source.

Here's what AllPsych Online has to say:

Category

Sexual Disorders and Dysfunctions

Etiology

Some evidence suggests that relationship issues and/or sexual trauma in childhood may play a role in the development of this disorder. Life stressors or other interpersonal difficulties.

Symptoms

Deficient or absent sexual fantasies and desire for sexual activity. This judgment must be made by a clinician taking into account the individual’s age and life circumstances. The lack of desire must result in significant distress for the individual and is not better accounted for by another disorder or physical diagnosis.

Treatment

Typical treatment would involve discovering and resolving underlying conflict or life difficulties.

Prognosis

The course of this disorder can be consistent or periodic, and can therefore resurface after a period of remission if relationship or life stressors re-emerges.

Source.

I have taken a few courses in psychology, including a course in Human Sexuality. I'd be interested in being involved in this if there is a need for me. I also second the idea of getting in contact with Dr. Bogaert. I don't see being Canadian to be an issue; the DSM was used as a source of information for my Human Sexuality course. I think the importance of contacting Dr. Bogaert would be to discuss any issues he sees with the DSM in relation to asexuality (as he is a professional in psychology) and then of course to show the DSM committee that asexuality is being considered academically.

I think some issues we face in tackling the DSM is showing them that asexuality is valid (though under-researched), and then trying to define a line between what should be diagnosed and what shouldn't. I personally think anyone who does not feel like they should become sexually interested/attracted for themselves (leave the partner out of it) should not be diagnosed with HSDD. However, what about approaching things like past trauma, medication, and cognitive structures that have lead to aversion to or fear of sexuality (for example, growing up and being told over again that being sexually involved is bad or sinful, etc.) and continue to consciously or unconsciously affect the person? That seems like it could become a bit of a problem. I think another thing we have to be careful of is that if we start trying to define a specific line ourselves, we begin to strictly define what is asexual and what isn't, and possibly will leave some people out who do feel that they are asexual.

Edit: I also found this article to be an interesting critique of the DSM with regards to sexual dysfunctions and what should be considered for the DSM-V.

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Kelly

Thanks for the link, Snowy.

To many of us, Persistently or recurrently deficient (or absent) sexual fantasies and desire for sexual activity does not sound like a disorder. ;)

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Lord Happy Toast

In an introductory course on psychology, I learned that the main reason the diagnosis exists is so that people can get insurance companies to pay for therapy.

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thylacine

It reminds me that I read once where the DSM had both homosexuality and PMS as "disorders" -- both of which are now just considered "the way things are" these days...

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asexual1976
Hypoactive sexual desire disorder (HSDD) is defined as the persistent or recurrent extreme aversion to, absence of, and avoidance of all, or almost all, genital sexual contact with a sexual partner. HSD becomes a diagnosable disorder when it causes marked distress or interpersonal instability

I hate to pour water on the evolving discussion fire, but I don't think I have a real problem with that definition.

Ok given, you could argue that under that definition an asexual who is happy with his asexuality but is in distress due to social pressures etc might be construed to fit into the HSDD-category.

Really it's a case of nit-picking. Sure, you could rename HSDD "HSDDD" (Hypo-sexual desire distress disorder), encompassing everyone with distress due to hyposexuality (be it due to asexuality or other reasons), but what would that accomplish for the asexual community (in practical terms) ? A person who is experiencing severe distress due to hyposexuality deserves help by a psychologist if they choose to see one, regardless of the reason for his/her hyposexuality.

Treatment usually involves trying to make the patient more sexual.

IMHO, that where the main problem lies. Psychologists need to stop jumping to the conclusion that all people that don't have sex need to be fixed. They need be aware of the fact that while there are many people out there who have sexual aversion "disorder" (e.g. due to trauma, rape etc.) and need help getting back to their sexual self, there is a small percentage of people who are quite happy with not having sex and, if they should end up in a psychologist's office, need help accepting their asexuality rather than futile conversion therapy to run them into sexuals.

Getting the psychological profession as a whole to accept the fact that asexuality exists as an orientation and is not inherently the result of trauma or fear will likely take years and many more scientific studies.

So in my opinion the definition can remain unchanged, but should ideally be supplemented by something like :

"The therapist should be aware that some people are innately not inclined to engage in sexual activity and that this should on its own should not be taken as evidence for the presence of HSDD."

That still wouldn’t 100 % preclude distressed asexuals from being included in HSDD – in fact I don’t think there is any concise wording that would make absolutely sure they are not - but it would make clear that for asexuals sexual orientation conversion (asexual>sexual), is not a proper form of therapy.

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Hallucigenia

Don't feel bad about "pouring water", asexual1976. This (that you've discussed in your post) is exactly the kind of discussion we need to have.

I am not even remotely a psychiatrist, but I can certainly see how keeping the diagnosis but merely changing the treatment options and attitudes would be a great boon to asexuals who find themselves in therapy. I can also see why people might want to change the definition itself, especially given the nebulous definition of "interpersonal difficulty" and the highly social nature of normative sexuality, and the stigma that some people feel results from having a "disorder". We should be discussing all our different options.

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Lord Happy Toast

I've read that according to the DSM III R (revised version of the 3rd edition), it was estimated that 20% of the population has HSDD. So when they say that the diagnosis requires "distress," be very skeptical. (Though the inclusion of distress may have been an addition in the 4th edition. I'm not sure.) Anyway, there is a more recent study (sexual dysfunction in America: Prevalence and predictors) that claims that 43% of women and 31% of men in the US have a sexual dysfunction. And the most common "sexual dysfunction" is low sexual desire. Apparently about 30% of women and 15% of men weren't that interested in sex (it wasn't dealing with lifelong lack of interest, but I'm not quite sure how it was defined. So it seems that a lot of people aren't all that interested in sex (at least for some periods of their lives,) and sexual desire doesn't even have to be statistically all that abnormal to be defined as a disorder.

I personally feel a bit conflicted about the category. On the one hand, from a scientific perspective it's sheer nonsense. It's just grouping a bunch of things that really aren't even that similar to each other and sticking a label on it. For example, there are the various subtypes:

Edit: I had previously said "specific" instead of "situational," but the basic idea is the same.

lifelong-generalized: this is a person who has never had much interest in sexual things (partnered or solitary)

lifelong-situational: this is someone who has never had much interest in having sex with anyone but solitary activity indicates

that they still have sexual desires.

acquired-generalized: they used to be interested in sex, but now they're not.

acquired-situational: they still have sexual fantasies (that bit about fantasies in the definition is ignored), but lack interest in their current partner. Someone who had masochistic fantasies but was afraid to tell his wife, so he often visited a dominatrix but rarely had sex with his wife would be in this category. Also, a guy who used to be very sexually interested in his wife, but after some problems lost interest in her, but regularly masturbated would be in this category.

What do all of these have in common? Not all that much other than a lack of sexual interest in one's current partner (or if one doesn't have a current partner, lack of interest in sex in general.)

From another perspective, I can see the value of having this category in order to get insurance companies to pay for therapy, and that can be helpful for people. On the other hand, I find it difficult not to view it as a form of making people feel sexually inadequate and then getting money from them. There is a lot of money to be made in making people feel sexually inadequate and then selling them a solution. Given the expectations of culture about how sexually interested people are apparently supposed to be (despite the fact that for a good number of people beyond just asexuals aren't too terribly interested in sex), I see HSDD as a way of abusing medical and scientific authority to reinforce these unrealistic expectations of sexuality. The amount of good scientific data is scarce. They almost never distinguish among the subtypes, and in the first 20 years of research on HSDD, there were about three controlled studies that used just HSDD people (without lumping in people with a different disorder).

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AVENguy

Great discussion.

I agree about both Bogaert and Brotto. They're probably our most well known advocates, but we have a small network of other researchers that we've slowly been building up that we can call on. I also have contacts at the Institute for the Advanced Study of Human sexuality here in SF, and I should be able to get some professors and students from there mobilized to help out.

It seems like a lot of the work to get done here isn't medical research, it's organizing. We have to articulate our concerns with HSDD, get people with scientific expertise talking about ways to reform it, and then get our suggestions to the DSM subcommittee. That's gonna take a lot of planning and bugging people and e-mailing around. What do people think of the basic strategy that I outlined above? (Get a bunch of scientists to help us come up with an alternative to HSDD, then have us and those scientists all submit the alternative to the DSM subcommittee.) If that's the plan how should we go about making it happen?

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Lord Happy Toast

There is already a certain amount of discontent in the field about HSDD at the present time. I'm no expert, but I've been trying to read up on stuff to at least get a general idea of where things presently stand in the field. One author (who published a paper a few years ago on the subject of revising the DSM's section on HSDD) said that as it stands, the much of the DSM's section on sexual disorder is based on a slightly modified version of Master and Johnson's conceptualization of the sexual response cycle (desire, excitement, orgasm, resolution.) I don't think there are any dysfuntions based on the 4th one. HSDD and Sexual Aversion disorder are dysfunctions of the first phase. Problems with erection or lubrication or pain during sex are dysfunctions of the second phase and so on. Anyway, what I read had said that in the DSM-IV TR, the definition of HSDD is based on the (discredited) understanding of HSDD of Helen Singer Kaplan, whose work was largely based on Masters and Johnson. The biggest problem is that it is based on the idea that men and women's sexuality and sexual response cycle are pretty much the same. Increasingly, there is more and more evidence suggesting that differences in male and female sexuality are not just the result of culture (I know this comes a shock to us all.) As it stands the definition of HSDD makes no distinction between males and females. I know that there are a good many people who think that the reworking of the definition of HSDD need to seriously take into consideration these differences.

One big issue has to do with the fact that there are now a good number of drugs to help with male sexual preformance (like Viagra), but there aren't any to help females. Some drug companies have been trying hard to find the "Viagra for women" (which is inherently problematic because impotence doesn't tend to be a large issue among women. "What exactly is such a drug supposed to do?" and "What problem is it supposed to solve?" are very legitimate questions.) There hasn't been much success, and increasingly this is believed to be because of physiological differences between men and women.

Anyway, the point is that there is already considerable discontent among some in the field with the current definition of HSDD and there are already some serious changes people want to make (though not necessarily the ones that we want to make.) In light of this, I think we need to contact one or two people knowledgeable about this (and about asexuality) to get an idea of where things stand so that we can have a better idea of what we want to do. After getting more informed, we can start to makes plans about organizing and what not. My first guess would be contacting Brotto to get her advice on on what's already going on with proposed changes to the DSM, how an asexual perspective might fit into that context and who she would recommend talking to.

I think that only after doing that would we be able to make a sensible plan on how to go forward (who to talk to, what sorts of arguments could be made, what sorts of arguments would be more effective with the DSM committee members, etc). If we were to try to get Tony Bogaert to help us out, the most effective thing that I think he could do would be to try to make an argument for understanding asexuality as a sexual orientation. However, based on his comments in the media, although he is sympathetic towards asexuals, his claims as a scientist are rather reserved (as they should be.) Because the very idea of what a sexual orientation is (what are we even trying to measure?) is very much up in the air and probably will be for a while, he is rather cautious in making the claim that asexuality as a sexual orientation. (It hard to make a strong case for asexuality as a sexual orientation if we aren't sure what a sexual orientation is.)

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asexual1976

I’m not really sure that we get into all the mud-slinging on the proper definition of HSDD at all.

Many people that present with a lack of sexual desire will have a low desire for sex because of a variety of reasons ranging from past abuse, hormone problems, sexual inhibitions etc. How exactly these get sorted into various sub-categories of HSDD isn't really our concern. Our concern is to make known and further acceptance for the fact that there is a group of people, however small it may be percentage wise, that does not have a medical or psychological reason for not having sex and that are perfectly happy with not doing so. And therefore they do not have to be treated for this symptom.

The main problem with HSDD is that its one of those modern day "syndromes". Modern medicine has, as knowledge of rare diseases and conditions has progressed, invented a whole range of names for conditions of unknown aetiology that are grouped by their symptoms alone. Find an isolated tribe in the Amazon, where children often have a cough with swollen bellies and it'll be the "Amazon swollen belly cough syndrome (ASBeCS)".

What we need to get the medical profession to understand is that the difference between people with hormone problems, past abuse, inhibitions, etc. and asexuals is that in former group low sexual activity is a symptom of an underlying problem while in the latter the is no such underlying cause.

And as an asexual will have no underlying problem, there is therefore nothing to be cured. Period. While it may be legitimate to do an investigation to rule out any of the aforementioned problems, in the end, if none can be found, the existence of such should not be construed.

In a nutshell :

  • HSDD is a group of symptoms and not a proper disease in its own right.
  • HSDD cannot be cured, only underlying causes for a lack of sexual desire can, thus leading to a disappearance of symptoms.
  • In asexuals there are no underlying causes and asexuality is thus “incurable”, much in the same way homo- or heterosexuality, as they too have no direct cause.

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Lord Happy Toast
The main problem with HSDD is that its one of those modern day "syndromes". Modern medicine has, as knowledge of rare diseases and conditions has progressed, invented a whole range of names for conditions of unknown aetiology that are grouped by their symptoms alone. Find an isolated tribe in the Amazon, where children often have a cough with swollen bellies and it'll be the "Amazon swollen belly cough syndrome (ASBeCS)".

Pretty much, but I would take it one step further. Within the sciences (or everyday human life), the use of categories is necessary. If we've tested a whole bunch of copper and found that it conducts electricity, we have good reason to believe that the next copper we find will also conduct electricity. We can't prove it and this is the problem of induction. However, if we didn't use induction, we would never be able to have expectations about anything and memory wouldn't help us. But there is another problem of induction. Suppose I define a blomk as anything that is copper or is one of the tires on my next door neighbor's car and then after testing a whole bunch of blompks (all of which turn out to be copper) and finding them all to conduct electricity, I conclude that (at least probably) all blompks conduct electricity. Therefore I can reasonable expect the rubber tires on my neighbor's car conduct electricity. (This is a simplified version--and I feel much easier to solve--of the grue problem. This problem makes my head hurt if I think about it too much.)

Anyway, I think that what this indicates is that the legitimacy some category should be treated as a hypothesis (i.e. that the things in the category have some important things in common other than merely being in the category.) In the context of medicine, I think it means that giving a label to something with similar symptoms of unknown etiology should be treated as hypothesis. Unfortunately, this often doesn't seem to be the case. Grouping things of unknown etiology but similar symptoms (when it seems reasonable to think they might have the same cause) makes sense as a working hypothesis to enable further study. The problem is that if people put a name on something they can feel like they've explained something when they haven't explained anything at all. In the case of HSDD, they have entirely abandoned any attempt at doing science or scientific medicine or having a category that has any explanatory power whatsoever--but apparently a huge part of the population has it. Thinking that there is some sort of common etiology isn't even reasonable if you just look at a handful of case studies.

From what I understand of HSDD, if the cause is low hormones, then hormone replacement may have a positive effect. If the cause is something else, drugs don't seem to help. At that point, they work in improving the relationship. Improving communication so that neither the low-desire partner nor the high-desire partner misinterpret the other's sexual desire/lack thereof and trying to encourage people to become comfortable with more touching when there is an understanding that sex will not follow seem to be the main treatments.

I think that in terms of changing the definition of HSDD, the goals I would advocate have to do with the fact that many asexuals (probably most) don't know anything about asexuality. Of concern for us in particular are the "lifelong" versions, (though some who identify as asexual haven't always been asexual.) Not surprisingly these are "much harder to treat." People with lifelong lack of sexual desire may be better of learning about asexuality than simply being labeled as having the mental disorder "hypoactive sexual desire disorder." As the DSM currently stands, such a person is much more likely to simply be diagnosed with a disorder that pointed to resources about asexuality, which they could then choose for themself if they think the term fits or not or is helpful for understanding themself and communicating with their partner (as the diagnosis is generally made for people in a relationship.) The other thing is that the category makes lack of sexual desire in and of itself a disorder. Fighting this may go a long way in increasing the perceived legitimacy of asexuality in the wider culture.

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asexual1976

Logic can be conplicated :)

E.g.

A) Correct logic :

Pneumocystis pneumonia is only present in people with AIDS (not true by the way, but this is only an example)

All people with AIDS are infected by HIV

therefore : All people with Pneumocystis pneumonia are also infected with HIV

B) False logic :

HIV causes AIDS

All people with AIDS are infected by HIV

wrong : All people infected by HIV have AIDS

or

Coughs are caused by viruses

I have a virus

wrong : I have cough

C) Asexuality/HSDD

HSDD is defined as having a lack of sexual interest.

A lack of sexual interest can be caused by various medical problems.

Correct : A person's lack of sexual interest could be caused by various medical problems.

False : A person with the symptoms of HSDD has various medical problems.

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Lord Happy Toast

Technically speaking, health problems cannot cause Hypoactive Sexual Desire Disorder. In addition to the main description given above (Criterion A), and the bit about distress (Criterion B), there is also a Criterion C:

"The sexual dysfunction is not better accounted for by another Axis I disorder (except another Sexual Dysfunction) and is not due exclusively to the direct physiological effects of a substance (e.g., a drug abuse, a medication) or a general medical condition." (DMS-IV TR p.541)

Don't quote me on it, but I think that if low sexual desire is caused by some medical problem, it's called "Sexual Dysfunction Due to a General Medical Condition." (Speaking of a tendency towards making up lots of names for "disorders"...)

Anyway, I found some websites regarding proposed changes to the sexual dysfunctions for the DSM that I thought were interesting.

One about changes to the sexual dysfunctions in general.

Another by the same guy

This one was specifically about HSDD and was my favorite.

The first two were written by someone who evidently has published multiple journal articles on the subject in recent years. I can't access one as my university doesn't subscribe to that journal, but it seems they do subscribe to a journal with the more recent one. I haven't gotten a chance to read it yet. Anyway, I'm excited about the prospect of taking on the DSM and it's been something I've wanted to do for quite some time now but didn't think it would be a realistic possibility for several years still.

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xaida

This is the day that I have been waiting for pretty much since I came to AVEN. Lets see what I could do to support this idea.

It seems like a lot of the work to get done here isn't medical research, it's organizing. We have to articulate our concerns with HSDD, get people with scientific expertise talking about ways to reform it, and then get our suggestions to the DSM subcommittee. That's gonna take a lot of planning and bugging people and e-mailing around. What do people think of the basic strategy that I outlined above?

It sounds like a great plan, but I'd maybe need more info: When exactly is "in a little while", that is: how much time will we have getting this through?

And how many representatives would be able to speak to the panel, that is: How many a-friendly experts and/or community members would we have to "recruit"? Would they all have to come from the US or how are the travel expenses covered? I made some very supportive contacts during the conference in Rome, who I could contact again.

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asexual1976

[quote Technically speaking, health problems cannot cause Hypoactive Sexual Desire Disorder. In addition to the main description given above (Criterion A), and the bit about distress (Criterion B), there is also a Criterion C:

"The sexual dysfunction is not better accounted for by another Axis I disorder (except another Sexual Dysfunction) and is not due exclusively to the direct physiological effects of a substance (e.g., a drug abuse, a medication) or a general medical condition." (DMS-IV TR p.541)

Don't quote me on it, but I think that if low sexual desire is caused by some medical problem, it's called "Sexual Dysfunction Due to a General Medical Condition." (Speaking of a tendency towards making up lots of names for "disorders"...)

The way I understand the definition, health problems (including psychological problems) can cause HSDD. The key word here is "exclusively". Let's say you are taking chemotherapy drugs which reduce your homone levels and thus reduce your sex drive. That would not be diagnosed as HSDD. Equally, if you were to loose interest in sex because of a medical problem with your sexual organs, it would not qualify as HSDD. But if you have low hormone levels due to an unknown cause [no secondary medical condition present], you would be.

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asexual1976

http://www.minddisorders.com/Flu-Inv/Hypoa...e-disorder.html has the following interesting bit about HSDD

Causes

PRIMARY HSDD. HSDD may be a primary condition in which the patient has never felt much sexual desire or interest, or it may have occurred secondarily when the patient formerly had sexual desire, but no longer has interest. If lifelong or primary, HSDD may be the consequence of sexual trauma such as incest, sexual abuse, or rape. In the absence of sexual trauma, there is often a repressive family attitude concerning sex that is sometimes enhanced by rigid religious training. A third possibility is that initial attempts at sexual intercourse resulted in pain or sexual failure. Rarely, HSDD in both males and females may result from insufficient levels of the male sex hormone, testosterone.

ACQUIRED HSDD. Acquired, situational HSDD in the adult is commonly associated with boredom in the relationship with the sexual partner. Depression, the use of psychoactive or antihypertensive medications, and hormonal deficiencies may contribute to the problem. HSDD may also result from impairment of sexual function, particularly erectile dysfunction on the part of the male, or vaginismus on the part of the female. Vaginismus is defined as a conditioned voluntary contraction or spasm of the lower vaginal muscles resulting from an unconscious desire to prevent vaginal penetration. An incompatibility in sexual interest between the sexual partners may result in relative HSDD in the less sexually active member. This usually occurs in the presence of a sexually demanding partner.

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Lord Happy Toast

Having read a bit more about HSDD, it seems that what I wrote above about the medical condition thing was somewhat inaccurate. If low sexual desire is caused by a general medical condition is isn't HSDD. Evidently, it is called "Hypoactive Sexual Desire Disorder Due to a General Medical Condition." I guess it's clear.

Asexual1976, I've seen that webpage before but I don't believe it. It gives as causes of life long HSDD various "causes" all of which are things that are generally considered to be bad. This is based on the belief that lifelong low (or no) desire for sex can't be normal. While the supposed causes could be true, I have failed to be able to find any scientific evidence supporting those claims, though I'm no expert and there is a lot of literature out there I don't know about (most of it.) I have found very knowledgeable people on the subject saying that the causes of lifelong, generalized HSDD in males are unknown. Moreover, establishing the above as causes would be very difficult. First, you have have to find a correlation between the various things and lifelong HSDD (which hasn't been done) in samples of people not drawn from therapists offices. Then, if you found a significant correlation, you would have to try to eliminate any reasonable possibilities other than A causes B (which is hard.) However, as far as I know, no study on HSDD in a population not drawn from therapists offices (and maybe even ones that are) actually use the subcategorization system. At this point, as far as I know, most "knowledge" about the various subtypes of HSDD are based on observations of therapists--that is, they are based on the post hoc fallacy and have not been tested in not therapist populations.

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Hallucigenia

*bumps* So, okay, where are we in terms of plans for this? Are we even finished step 1? We've got DJ, mandrewliter, xSTELLA, xaida if Germans are allowed - who else? Is that enough? Obviously I'm on board as a member of the Project Team - I'm totally jazzed about this and the PT can provide some much needed organization - but not as a person with academic credentials, 'cause, as previously mentioned, I'm not one.

What are our plans for how to contact Brotto, Bogaert, Prause, and DJ's friends, and what precisely are we planning to say to them?

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AVENguy
*bumps* So, okay, where are we in terms of plans for this? Are we even finished step 1? We've got DJ, mandrewliter, xSTELLA, xaida if Germans are allowed - who else? Is that enough? Obviously I'm on board as a member of the Project Team - I'm totally jazzed about this and the PT can provide some much needed organization - but not as a person with academic credentials, 'cause, as previously mentioned, I'm not one.

What are our plans for how to contact Brotto, Bogaert, Prause, and DJ's friends, and what precisely are we planning to say to them?

Quick update: I've been working to put together a support team who will work with a group of advisers around this. I'm staying in touch with the NCTE about strategy. Lots of discussion's happening, but it's mostly nitty gritty and mostly offline. We'll bring it to AVEN as soon as involving a lot of people will help rather than gum up the process.

That being said, parallel complimentary projects are encouraged if people feel so inclined!

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Hallucigenia

Ok, thanks for the update. :)

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SlightlyMetaphysical

How're things going with this? I've not heard from it for a while.

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Lord Happy Toast

Things are going well and we're making progress, but we don't have anything concrete to report on yet. When we do, we'll be sure to let everyone know.

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endplusone

Wow, sorry about dropping out of this. My school year ended up getting busier than I intended. However, I will be in contact with a professor in the Psychology department at my school at some point because I'm teaching on asexuality again for the Human Sexuality course and I might see if she has any suggestions or input on the matter.

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