Saturday, March 28, 2009

Hypoactive Sexual Desire Disorder and the Asexual Community: a history

Since last June, there have been a few of us in the asexual community working on a project concerning asexuality and a diagnosis in the Diagnostic and Statistical Manual of Mental Disorder (DSM) saying, roughly, that not being interested in sex in a mental disorder. We’ve been keeping a low profile during the course of this project, but now that the project is over we wanted to get a chance to explain the situation more fully because it is a complex matter with no clear answers. First, I’ll give a bit of history that I’ve slowly been piecing together. I’ll start with some general background and then the history of the diagnosis. Then I’ll backtrack to look more closely at the context the diagnosis was created in, and then move ahead the considerable controversy surrounding it over the past decade or so. This should help us to understand where we fit into this larger picture, which should help shed light on the form that our project took.

The first version of the DSM was published by the American Psychiatric Association (APA, not to be confused with the American Psychological Association, also called the APA) The first version (DSM-I) was published in 1952. Since then, there have been DSM-II (1968), DSM-III (1980), DSM-III-R (1987, R=Revision), DSM-IV (1994), and DSM-IV-TR (2000, TR=Text Revision.) DSM-V is scheduled to be published in 2012. The DSM is widely used by psychiatrists, clinical psychologists, and social workers.

Masters and Johnson’s book Human Sexual Response was published in 1966. Focusing largely on sexual physiology, they emphasized the (physiological) similarities between male and female sexuality. A hallmark of that book was a four stage (linear) model of human sexual response: excitement, plateau, orgasm, and resolution. In 1970, their book Human Sexual Inadequacy was published; it was a book on sexual problems and how to treat them. This book became fundamental to much subsequent sex-therapy. [1] Their model did not focus on sexual desire, but rather on how and whether the genitalia functioned. In 1977 two sex therapists, independently of each other, proposed a diagnosis for lack of interest in sex. Helen Singer Kaplan called it “Hypoactive Sexual Desire” (HSD) and Harold Lief called it “Inhibited Sexual Desire” (ISD). Kaplan has written much more extensively on the subject, and to incorporate this “problem” into their sexual model, she proposed the “triphasic” model, based on Masters and Johnson: desire, excitement, and orgasm. (Sometimes resolution was added as well, but it is typically ignored because not a lot of “dysfunctions” happen there.) Kaplan first became aware of this “problem” in studying cases where sex therapy failed: failure was especially common in situations not where the genitalia did not function “properly” but when one of the partners simply wasn’t interested in sex. [2] To announce this shocking news—some people aren’t interested in sex!—to the world of sex therapy, these two therapists invented this new “disorder”. [3]

Before the DSM-III was published in 1980, there was no standardized way of categorizing “sexual dysfunctions,” though Masters and Johnson’s work was influential. In DSM-III, various “sexual dysfunctions” were added, largely based on Kaplan and Lief’s modifications of Masters and Johnson’s work. Not coincidentally, Kaplan and Leif were both members of the committee responsible for writing this part of DSM-III. Very little empirical work had been done on “sexual dysfunctions” when these were added to the DSM, and they had to rely on clinical observation. [4] The system there was created with minimal scientific foundation. “Inhibited Sexual Desire” officially became a mental disorder and asexuality did as a consequence, even though not mentioned by name. In the DSM-III, ISD is described as “Persistent and pervasive inhibition of sexual desire.” [5]

In DSM-III-R (1987) ISD’s name was changed to Hypoactive Sexual Desire Disorder (HSDD) because “Inhibited” suggested psychodynamic etiology (think Freud, his followers and psychoanalysis), and the DSM-III-R aimed to be atheoretical. Also, the diagnosis was subdivided into HSDD and “Sexual Aversion Disorder” (SAD). This diagnosis is controversial and rarely used. There were a few other changes as well. A subtyping was added for all the sexual dysfunctions. Diagnoses could be lifelong or acquired. (For HSDD, lifelong is where the person has never been interested in sex, and acquired is where they used to be but aren’t anymore.) It could be generalized or situational (generalized is where the person has no interest in any sexual activity with anyone or alone, and situational is where they lack sexual desire towards their current partner but may masturbate and/or have desire for people other than their current partner.) Also, diagnoses could be psychogenic or biogenic (psychologically or biologically caused; in the case of the latter, it’s not a mental disorder.) Also, added to the definition of HSDD was a lack of fantasy. This is bizarre and self-contradictory because people with the “situational” subtype often do have sexual fantasies, so technically, “situational” HSDD isn’t HSDD, but you’re supposed to ignore that fact. All the authors on the subject do. The new diagnosis read: “Persistently or recurrently deficient or absent sexual fantasies and desire for sexual activity.” [6]

In 1994, the DSM-IV was published. In that version, the committee working on the sexual dysfunctions was told that they could make no changes without research to support it. They only found eight studies on HSDD and two on SAD. [7] Ironically, a requirement that changes much be supported empirically seems like it would help make the diagnosis scientifically rooted, but in this case, it forced them to leave the diagnosis as scientifically unfounded as when they started. Additionally, criteria identical to the one for HSDD that a person must experience “marked distress or interpersonal difficulty” in order to be diagnosed with HSDD were added to all of the diagnoses in the “Sexual and Gender Identity Disorders.” This reflected a change made throughout the DSM—these criteria (the clinical significance criteria) took different forms in other parts of the DSM. Their inclusion to the “Sexual and Gender Identity Disorders” was done quickly and with little thought of consequences. Some members of the sexual dysfunction committee don’t even remember discussing the issue. Interestingly, the introduction of this criterion led to a self-contradiction in the diagnosis: in life-long cases, the DSM says that the time of onset should be regarded as puberty. (This is what Lief recommended in his ’77 piece.) This means that for someone who has never been interested in sex and is not distressed about it, they do not have HSDD, but if they later do become distressed about, it means that they have had HSDD since puberty, even when they didn’t have HSDD.

What is interesting about this is that to date, the whole substance of the asexual community’s argument that DSM does not call asexuality a disorder consists of emphasizing the clinical significance criterion. The DSM-IV-TR was published in 2000. There were no changes in HSDD between these two versions. This brings us up to the present version of the diagnosis. Now I want to backtrack and look more carefully at the historical context in which it was created.

Perhaps the most insightful commentary on the historical background of the creation ISD/HSDD comes from two highly respected sex therapists: Sandra Leiblum and Raymond Rosen in their introduction to a book called Sexual Desire Disorders. They observe that sexual desire is rarely viewed neutrally, and drives either to suppress or excite it are commonly seen, often changing from one generation to the next. In Western cultures, the 1970’s was a time for the latter. Enthusiasm for all things sexual abounded with the social message about sex being “Sex is good for you, and the more the better.” They write,

“Sexual enthusiasts were championed by the media, and those individuals for whom sex was a source of neither great interest nor great pleasure felt alienated and abandoned in this new sexual climate. It is, therefore, not surprising that complaints involving insufficient sexual desire (but rarely the reverse!) first became recognized as a discrete clinical entity in the mid 1970's.” [8]

In the asexual community, to challenge the APA’s authority to regard asexuality as a mental disorder, the fact that homosexuality used to be regarded as a mental disorder is cited. Homosexuality was removed from DSM-II in 1973 (actually, it was replaced with a diagnosis that said homosexuality was only a disorder if the person was distressed about it.) One scholar argued that the creation of ISD can be seen in psychiatry’s long history of giving itself the right to decide what is and is not “normal” sexuality. [9] In doing some research into the history of ISD/HSDD, what I found is that the relationship between the pathologization of sexual disinterest is far closer to the pathologization of homosexuality and other non-standard sexual practices than I had expected.

Kaplan and Lief both had psychoanalytic backgrounds (think Freud and his followers,) and, it seems, they operated with a psychodynamic theory of etiology for HSDD/ISD (etiology is a term meaning the cause of something, especially in medicine.) From what I can gather, Kaplan’s view was that desiring (fairly vanilla) sex in a loving heterosexual relationship was natural. Anyone who did not want this must be inhibiting their natural heterosexuality. As such she saw all of the following as instances of HSD because of lack of desire for the right kind of sex: the fetishist, the pedophiliac, the exhibitionist, the masochist, the homosexual. (These are the terms she uses. I will forgo playing, “Which of these things are not like the others?”) Kaplan actually thought that all instances of not wanting (the right kind of) sex, along with not wanting any sex at all, were basically caused by the same thing: anxiety. [10] In a later work, she ascribed it to people “turning themselves off.” [11]

I now want to move ahead to 1998, the year Viagra was approved by the FDA to treat “erectile dysfunction.” The pharmaceuticals quickly realized that this drug was very profitable. If only they would create the Viagra for women, just think how much more money they could make! But there’s a problem. What exactly is the “pink pill” supposed to fix? What is the female equivalent of not being able to get an erection? So they had to invent a new disease: Female Sexual Dysfunction (FSD.) In 1998, the Sexual Function Health Council of the American Foundation of Urologic Disease convened the first “Consensus Development Panel on Female Sexual Dysfunction” to create a way to classify FSD.

In a standard disease-mongering practice—giving inflated estimates of prevalence—the consensus document declares, “[FSD] is age-related and highly prevalent, affecting 20-50% of women.” [12] (By age-related, they probably mean the fact that many women’s sexual interest declines after menopause, and they are declaring this a disorder, despite its being a normal part of life for many women.) The supposed justification for this panel, according to their consensus statement, was: “A major barrier to the development of clinical research and practice has been the absence of a well defined, broadly accepted diagnostic framework and classification for female sexual dysfunction.” [13] So, what did this highly publicized consensus document created by leading researchers on female sexuality come up with? Various definitions were proposed and decided on by secret voting, and basically, they rehashed the sexual dysfunctions of the DSM-IV with a few slight modifications. By the way, the panel was funded by Eli Lilly/ICOS, Pharmaceuticals, Pentech Pharmaceuticals, Pfizer Inc., Procter & Gamble, Schering-Plough, Solway Pharmaceuticals, TAP Pharmaceuticals, and Zonagen.

In response, a counter conference was organized by feminist scholar and clinical psychologist Leonore Tieffer. Meeting in summer 2000, a group of feminist clinicians and social scientists created a “manifesto” and planned a campaign to promote their New View of Women’s Sexual Problems. [14] They state, “We believe that a fundamental barrier to understanding women's sexuality is the medical classification scheme in current use, developed by the American Psychiatric Association (APA) for its Diagnostic and Statistical Manual of Disorders.” [15] This is a direct challenge to the Consensus Development Panel for FSD. They have three main criticisms of the current model. 1) Non-equivalence of male and female sexuality. Studies that have actually asked women what sexual difficulties (if any) they have, have found that the things actual women complain of don’t really fit well into the DSM’s framework. 2) Erasing the relational context of sexuality. Many women’s sexual problems are, at root, relationship problems. The DSM’s approach to “sexual dysfunctions” focuses entirely on individuals. 3) Ignoring differences among women. To correct these, they propose a “New View of Women’s Sexual Problems” a radically different way of understanding sexual problems. (They use the word “problems” rather than “dysfunctions” because they feel that a medical model is inappropriate for many such problems.)

In addition to the New View, there have been a few other lines of criticism. One criticism is that the linear model doesn’t fit very well the actual experiences of women, and a more cyclical model involving positive feedback loops has been proposed. [16] (However, in a study where women were explained Masters and Johnsons’ model, Kaplan’s model, and Bassons’ model (the cyclic one) and were asked to choose which best fits their experience, it was found that similar proportions of women chose each of the three models. [17]) Also, it is claimed that there is a sizable minority of women who report never experiencing active desire for sex but can become sexually excited in the right context when a sexual encounter is initiated by a sexual partner. Terming this “responsive desire,” a lack of responsive desire was added to the definition of HSDD in the above mentioned consensus document.

Another line of criticism is that some reasons for not being interested in sex should be seen as adaptive rather than maladaptive. [18] (Everyone has problems sometimes, and some ways of dealing with our problems are healthy and productive. These are adaptive responses. Some ways of dealing with problems only make things worse. These are maladaptive.) Some major causes of loss of sexual interest include relationship problems, fatigue and stress. Feeling that loss of sexual desire in these contexts represents an adaptive response, it has been argued that labeling it a disorder makes little sense. The third major criticism has to do with the clinical significance requirement: some people don’t like the fact that people have to be distressed to call something a sexual dysfunction, and serious proposals to remove this requirement have been made. [19]

Now our story moves away from academic debates in journals and conferences to a little closer to home. There has only been an asexual community since about July 2001. AVEN’s forums have been up since May 2002, [20] and the first reference to HSDD I can find is September 2002. [21] Responses to HSDD have been negative. In media articles and university lectures, we have stressed the clinical significance criterion. Since we’re not distressed, asexuality is not a disorder according the DSM. A number of us have been itching to challenge the APA on this for quite some time, but felt that we were too small, too little researched, too powerless to do anything. Before convincing people that our sexual orientation isn’t a disorder, we have to convince them that it exists.

This changed in June 2008 when David Jay, while in Washington DC for his job, decided to visit some LGBT lobbying organizations. In a story his explain on Love from the Asexual Underground, he ended up having an unexpected meeting with Mara Keisling, Executive Director of the National Center for Transgender Equality. She asks him, "Are you all doing anything with the DSM?"

He responds, "I'd love to, but I don't think we have the capacity to target someone like the APA right now."

"You'd be surprised.” Indeed we have been.

After blogging about this conversation, he made a post on AVEN trying to get volunteers for a project aimed at generating discussion around the subject. [22] I was the only person to volunteer in response to this. After first learning about asexuality, I had tried to learn everything I possibly could about the subject. I had thought that perhaps there could be something to be learned from the literature on lifelong HSDD, so I had looked into that literature, only to find out that acquired HSDD is much more studied, and I could find nothing on lifelong HSDD except for a few case studies here and there. However, I did find Kaplan’s work, which convinced me that the diagnosis has no scientific foundation whatsoever. Once the project got underway, I did some reading to get myself up to speed on the literature. One of the first things to come from this project was a complete rewrite of the Wikipedia article on HSDD.

The first problem that we had to deal with is that none of us is an expert in human sexuality, a psychiatrist, or a clinical psychologist. There isn’t much research on asexuality, and we couldn’t come up with any good reason why the DSM people would actually care what we have to say. The other big difficulty is that a lot of people to see therapists complaining of low sexual desire. In the US, being diagnosed with something is an important part of getting insurance reimbursement, so simply advocating that the diagnosis be deleted did not seem a viable option. We knew we wanted a more asexual-friendly way of diagnosing low sexual desire, but we weren’t even sure what that would be. Our initial plan was to interview people who were experts and post interviews on a blog. Maybe one of the DSM people might care enough to read our blog? Or maybe one of our interviewees might be able to make our case to the DSM people for us? DJ recruited two AVENites to help with logistics: one to manage our blog and one to keep everyone on task.

In a meeting on Skype, we decided that it would be helpful if we had a few more people to help with interviews. So DJ made another post on AVEN (this one was in July) trying to recruit psych. students to help out. [23] Three people volunteered. Two couldn’t figure out why we wanted to get asexuality into the DSM (facepalm) and ended up not joining our team, so we only got one additional member.

Some of you may recall a paper on asexuality done by people at the Kinsey Institute—Nicole Prause and Cynthia Graham. The paper was mostly written by the former, then a grad student. We were happily surprised to discover that the latter was one of the members of the sexual dysfunctions workgroup. Also, Lori Brotto, who has been involved in studying asexuality and said nice things about us in the media was added to the sexual dysfunctions workgroup several months after the rest of the Sexual and Gender Identity Disorders group was put together (for reasons I’m still unsure about, though I can speculate.) So we were very excited about her addition because we know she likes us.

DJ contacted Dr. Graham (and mentioned our project to Dr. Brotto before we knew about her addition to the committee), and our interest was discussed in one of their meetings, and it was suggested (in a very passive voice kind of way) that we discuss the matter over the phone with the chair of the sexual dysfunction workgroup. So DJ and I eventually were able to set up a time to talk to him, and we had about a 15 min. conversation back in September.

We made our spiel: we mentioned places were asexuality has been brought up in the literature; we pointed out that questions were asked but answers were scare. Our interest was in generating dialogue with experts to try to generate ideas around these questions. He said that the workgroup would be interested in this. Whether this was genuine interest on his part or only reflected interest on the part of one or more committee members, I have no idea.

This made our original idea of a blog unnecessary because the workgroup was already interested in what we had to say, much to our own surprise. A very pleasant surprise. The project was based on our self presentation as very nice asexual activists who have no interest in telling them how to do their jobs (or trying to use political pressure to make them do what we want.) We weren’t those kinds of activists at all (subtext: we’re very different from the trans-activists, even though we secretly like them. It was, after all, a trans-activist who encouraged us to do this thing in the first place.) This part of our strategy was the reason that the project was very little discussed in the asexual community.

At that point, we needed to start doing interviews. DJ recruited another member of the asexual community, one with a master’s degree in psychology, and we had to start putting together a list of questions to ask in interviews. Doing interviews proved to be a slow process, and we ended up getting a grand total of seven, after contacting over a hundred people. Around late Jan. early Feb. we needed to decide what exactly we would send the committee. Eventually, what we sent was a report with a cover page, an abstract, table of contents, introduction, literature review, list of question with commentary and motivation, interview methods, interview analysis, three personal statements, and a conclusion. Also, interview transcripts were included as an appendix, as was a piece on “personal distress” I wrote, and a paper published by an interviewee who requested it be included. Because interviewees were told that we would send them to the chair of the sexual dysfunctions workgroup, we felt that we had consent to share them in that venue but not in any other. As such, we are not making these available to members of the asexual community (or anyone else other than the chair of the sexual dysfunctions committee, and we’re not really sure what he’s going to do with them.)

The final project was emailed to the chair of the sexual dysfunctions workgroup on March 19. So, the question is: What will the sexual dysfunctions look like in DSM-V? I haven’t a clue. Perhaps we will have to wait until 2012 to find out.

Edit: Further information is available at dsm5.org

[1] Irvine, Janice (2005) Disorders of Desire. Temple University Press. pp. 45, 60-61, 70
[2]Kaplan, H.S. (1995) The Sexual Desire Disorders: Dysfunctional Regulation of Sexual Motivation. Routledge. pp. 2, 7-8
[3] The articles are
Kaplan, H.S. (1977). Hypoactive sexual desire. Journal of Sex & Marital Therapy, 3 (1), 3-9.
Leif, H. (1977). Inhibited sexual desire. Medical Aspects of Human Sexuality, 7, 94-95.
[4]Segraves, R., Balon, R., & Clayton, A. (2007). Proposal for changes in diagnostic criteria for sexual dysfunctions. Journal of Sexual Medicine, 4 (3), 567-580.
[5] American Psychiatric Association. (1980). Diagnostic and Statistical Manual of Mental Disorders, (3rd ed.). Washington, D.C.: Author.
[6] American Psychiatric Association. (1987). Diagnostic and Statistical Manual of Mental Disorders, (Revised 3rd ed.). Washington, D.C.: Author. p. 293.
[7] Schiavi, R. C. (1996) Sexual Desire Disorders. in ed. Widiger, T.A., Frances, .,J. Pincus, H.H., Ross, R., First, M.B., Davis, W.W., DSM-IV Sourcebook vol. 2.
[8] Leiblum, S.R., Rosen, R.C. (1988) Introduction: Changing Perspective on Sexual Desire. in ed. Leiblum, S.R., Rosen, R.C., Sexual Desire Disorders. pp. 1-15. p. 1
[9] Irvine (2005) chapter seven
[10] Kaplan 1977
[11] Kaplan 1995
[12] Basson, R., Berman, J., Burnett, A., Derogatis, L., Ferguson, D., Fourcroy, J., Goldstein, I., Graziottin, A., Heiman, J., Laan, E., Leiblum, S., Padma-Nathan, H., Rosen, R., Segraves, K., Segraves, R.T., Shabsigh, R., Sipski, M., Wagner, G., & Whipple, B. (2001). Report of the international consensus development conference on female sexual dysfunction: Definitions and classifications. Journal of Sex and Marital Therapy, 27 (2) 83-94. p. 83
[13] ibid p. 84
[14] http://www.fsd-alert.org/history.asp

[15] http://newviewcampaign.org/manifesto1.asp
[16] Basson, R. (2002) Are Our Definitions of Women's Desire, Arousal and Sexual Pain Disorders Too Broad and Our Definition of Orgasmic Disorder Too Narrow? Journal of Sex and Marital Therapy. 28 (4) pp.289-300.
[17] Sand, M., Fisher, W.A. (2007) Women's Endorsement of Models of Female Sexual Response: The Nurses' Sexuality Study Journal of Sexual Medicine. 4 (3) 708-719.
[18] Bancroft, J., Graham, C.A., & McCord, C. (2001). Conceptualizing women’s sexual problems. Journal of Sex and Marital Therapy, 27 (2), 95-103.
[19] e.g. Althof, S.E. (2001). My personal distress over the inclusion of personal distress. Journal of Sex and Marital Therapy, 27 (2), 123-125.
[20] http://www.asexuality.org/wiki/index.php?title=AVEN
[21] http://www.asexuality.org/en/index.php?showtopic=104&mode=linear
[22] http://www.asexuality.org/en/index.php?showtopic=32223
[23] http://www.asexuality.org/en/index.php?showtopic=32843