SF Unconference 2017 — Session #5: Ace Pathologization

This is a summary of some of the topics discussed in the “Ace Pathologization” session at the 2017 SF Asexuality Unconference.

In this session, we talked about how asexuality is pathologized in some medical or psychological circles.  In the DSM-5 (the latest version of the handbook for diagnosing mental disorders), there are a pair of similar disorders:  Male Hypoactive Sexual Desire Disorder and Female Sexual Interest / Arousal Disorder.  The diagnostic criteria for these “disorders” are things like “Absent interest in sexual activity”, “No initiation of sexual activity, and typically unreceptive to partner’s attempts to initiate”, and “Persistently or recurrently deficient (or absent) sexual/erotic thoughts or fantasies and desire for sexual activity.”  Or, as an asexual might call it, “Just another Tuesday.”  Now, the DSM-5 has made a few improvements over the DSM-IV.  It removed “Interpersonal distress” as one of the criteria, which means that you can’t be diagnosed if you’re fine with it, but it bothers your partner.  More importantly, the DSM-5 introduced explicit exclusions for asexuality, stating plainly that if someone self-identifies as asexual, they should not be diagnosed with either “disorder”.

Now, hey, that’s great, asexuality is recognized and all, but there are several problems here.  First, is use of phrase “self-identifies”.  In order to qualify for the asexuality exclusion, you have to say something like “I am asexual, so I don’t have MHSDD”.  But if you’ve never heard of asexuality, well then, you can’t say you’re asexual, so congratulations, you’ve got MHSDD!  (And now that you have MHSDD or FSIAD, here’s some potentially dangerous pills for you.  Here’s some ineffective therapy tips that will only make you feel more broken.)

Second, the asexuality exclusions in the DSM-5 are buried in the notes about these “disorders”, where it’s easy to overlook them, and only in the full version.  The desk reference for the DSM-5 omits these notes and any mention of asexuality entirely.

Going back to the remark on “potentially dangerous pills”, we talked about Addyi/Flibanserin.  Addyi is terrible on several fronts.  First, it doesn’t really work.  Clinical trials showed barely any difference over a placebo, and what little difference there is comes with side effects like “sudden loss of consciousness” and a restriction on drinking alcohol (and grapefruit juice!) while taking it.  Second, the approval process was questionable.  It had failed FDA approval several times before (because it didn’t work and was dangerous).  It was originally meant to be an anti-depressant, but it didn’t work as one, so they decided to change what it’s meant to treat and try again.  Part of the clinical trials for a pill designed for women were only tested on men.  Because the pill was a medical failure that couldn’t be approved on the basis of safety and effectiveness, the company who owned the rights decided to push a “gender equality” angle instead, saying that it’s unfair that men have Viagra and Cialis and Levitra and women have nothing. (Disregarding the fact that they are entirely different types of pills.  Addyi isn’t a mechanical drug designed to aid physical arousal, it’s literally meant to be a mind-changer, something that’ll make you mentally more interested in having sex.  Men don’t have a pill that does that, either.)  And third, the corporate shenanigans going on with the companies involved with this pill are a staggeringly clear example of what people are complaining about when they talk about greedy pharmaceutical companies.  I don’t spend my days decrying Big Pharma as the devil, but hoo-boy do these people have some slimy things going on.

There is an ever-present fear that the makers of Addyi will eventually start to make a marketing push for the pill (they haven’t yet because congressional investigations, federal subpoenas, and the SEC poking its nose in your business tends to make you nervous about introducing a pill that can cause a “sudden loss of consciousness”).  When they do, it will undoubtedly lead to thousands of asexual women (especially ones who don’t know they’re asexual, but certainly not limited to them) being pressured into taking this dangerous pill that doesn’t work.  Well-meaning people will throw “They have a pill for that now” at anyone who says they’re asexual, and doctors will push this medication on their patients, because the ballpoint pen they just got says it’s wonderful.  The existing marketing materials for Addyi push it as a treatment for Female HSDD, which isn’t even recognized by the DSM-5 anymore.  They make no mention of asexuality, because asexuals aren’t going to be profitable.

A lot of things have been written about Addyi/flibanserin, so I’ll leave a few of them here and move on.

The Ace Flibanserin Task Force

For Asexual Community, Flibanserin Is A Bitter Pill To Swallow

Flibanserin:  The Female Viagra is a Failed Me-Too Antidepressant

I’m a Feminist.  Here’s Why I Don’t Support The “Female Viagra”

The prevalence of asexuality was discussed.  We went over the 1% statistic, the wider 1-6% estimate, and talked about some of the problems with accurately determining the true number of asexual people.  This post provides a decent overview of the numbers and what’s wrong with them, and potentially what can be done about it.

We talked about good and bad experiences with therapists, but as those conversations were of a personal nature, I will not repeat them here.  Suffice it to say, there are some therapists who are good and some who should have their licenses revoked.

We talked about finding an effective therapist.  One of the tips was to look for a solid LGBTQIA+ friendly therapist.  Ask around for references.  If you don’t have any friends you can ask, your local LGBTQ Center/QRC might be able to help point you in the right direction.  However, that’s not a sure-fire solution.  Some people mentioned that they have encountered queer therapists who are not ace-friendly.  Another tip was to provide your caregiver with research or informational materials on asexuality, if they are skeptical.  RFAS has some good resources, some of which are designed for healthcare practitioners.

At the same time, it was clear that it shouldn’t be the patient’s responsibility to make sure their doctor knows how to work with an asexual patient.  We talked about more proactive outreach, where asexual people talk to doctors and therapists and others about asexuality and working with asexuals.  Maybe that’s going to a conference and running a session on asexuality, or maybe that’s talking to a local clinic about doing a lunchtime brownbag session for their doctors.  Is anyone out there working on something like this?

 

 

Asexuality in the DSM-5

DSM-2 DSM-1

Asexuality is OFFICIALLY not a disorder, according to the APA.

The images above are from the DSM-5, which is the latest edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders.  The DSM-5 is a really important book.  It is used by doctors and mental health care providers around the world to diagnose mental disorders.

The DSM-5 explicitly and clearly recognizes asexuality, and says that if a person is asexual, that they should not be diagnosed with Female Sexual Interest/Arousal Disorder or Male Hypoactive Sexual Desire Disorder.

This book reaffirms that you are valid, your feelings are real, and that you do not have a disorder for feeling that way.

Anyone who claims otherwise is wrong.

They do not know what they are talking about.  You can point them at this book as proof that they are wrong.

 

Full Reference:

On page 434, in the section on Female Sexual Interest/Arousal Disorder (302.72), at the end of the “Diagnostic Features”, it reads:

If a lifelong lack of sexual desire is better explained by one’s self-identification as “asexual”, then a diagnosis of female sexual interest/arousal disorder would not be made.

On page 443, in the section on Male Hypoactive Sexual Desire Disorder (302.71), at the end of the “Differential Diagnosis”, it reads:

If the man’s low desire is explained by self-identification as an asexual, then a diagnosis of male hypoactive sexual desire disorder is not made.

Certainly, this is a vast improvement over what was in the DSM-IV.  Not only was there no asexuality exclusion there, but “interpersonal difficulty” was one of the diagnostic criteria for HSDD.  That meant that even if you were fine with being asexual, you could still be diagnosed with HSDD if someone else had an issue with it.  Additionally, the description of “Lifelong Generalized HSDD” was very similar to how people describe asexuality.

But this is not enough…

There are problems with what’s in the DSM-5.

  • “Scare quotes”:  One of the most noticeable issues is that in the section for FSIAD, the word asexual is in quotation marks.  This has the unintended side effect of delegitimizing asexuality in the minds of the reader.  They might see asexuality as a real thing, but have more doubts about “asexuality”.
  • Self-identification:  As written, these exclusions require that the patient say “I’m asexual” for them to apply.  That’s fine for those of us who know who we are, but what about those who don’t?  You can’t self-identity as asexual if you’ve never even heard of asexuality.  And there are hundreds of thousands, if not millions, of people out there who are in that situation.  I’ve personally heard stories of people who have gone through “treatment” for HSDD.  It didn’t work and made them miserable.  Only afterwards did they discover that they were ace.  Self-identification only works when there is widespread awareness.  Psychiatrists need to be proactive in this regard.  Certainly, a psychiatrist should never “diagnose” someone as asexual, but they need to be providing the tools and information for their patient to make that determination on their own.
  • Asexuality is not mentioned in the Desk Reference version of the DSM:  The DSM is a thousand page, 3 lb. monster of a book.  Because of this, there’s an abridged variant, that only contains the diagnostic criteria.  Unfortunately, there’s no mention of asexuality in the diagnostic criteria for either disorder.  The asexuality exclusion is located in a different section of the text.  That means that if someone just looks at the diagnostic criteria in the Desk Reference, they’re not going to see it.
  • Clinically Significant Distress:  Part of the diagnostic criteria for these disorders is that there must be “clinically significant distress”.  But…  Repeatedly being told that you’re broken can cause “clinically significant distress”.  Wondering why you’re so different from everyone else can cause “clinically significant distress”.  Being pushed to fix something when there’s nothing wrong can cause “clinically significant distress”.  None of those are signs that you have a disorder, those are signs that the world around you has a disorder.

One more thing…

I would like to make it clear that I am not saying “We are valid because we’re in this book.”  We are in this book because we are valid.