Sticky diagnostic labels


Last week, at my mom’s house in New Jersey, I was thumbing through her copy of the Sunday New York Times, when an article titled “Idea of New Attention Disorder Spurs Research, and Debate” caught my eye. “Called sluggish cognitive tempo,” the author writes in the second paragraph, “the condition is said to be characterized by lethargy, daydreaming, and slow mental processing.” Approximately two million children are thought to have the disorder.

Sluggish cognitive tempo??? I thought to myself, rolling my eyes as I read that sentence. I have that on a GOOD day. A search on PsycINFO, the most comprehensive database in the field of psychology, turned up 76 articles about sluggish cognitive tempo (SCT). One of those articles, written by Stephen Becker of Miami University, identifies two subtypes of SCT – daydreamy-spacey and sluggish-lethargic. (I swear to you I’m not making these terms up.) There’s even a Sluggish Cognitive Tempo assessment scale, which is a checklist that includes items such as the following:

Is unmotivated.

Appears to be sluggish. 

Daydreams. 

Seems to be in a world of his or her own. 

Is underactive, slow-moving, or lacks energy.

Not to belittle the experience of people who really struggle with being unmotivated, sluggish, and mentally distracted, but it’s times like these when I feel like I need to apologize on behalf of my professional field. I wouldn’t be surprised if some children exhibit “sluggish cognitive tempo” in school because they’re bored, or because they’re not given enough opportunities for physical activity, or because they don’t get adequate nutrition, or because their sleep is disrupted. Interestingly, all of the professionals quoted in the New York Times article were affiliated in some way with pharmaceutical companies (which made me question the journalistic objectivity of the article).

The mental health field has been under intense scrutiny for decades, especially since the publication of DSM-5. This recent revision of the diagnostic manual has been openly and venomously criticized by Robert Spitzer (who chaired the DSM-III revision), Allen Francis (who chaired the DSM-IV revision), and Thomas Insel (who is the director of the National Institute of Mental Health) for its lack of scientific rigor. Psychology as a discipline has a long and checkered history of overpathologizing and wrongly pathologizing people – particularly when it involves using diagnosis to police non-normative behavior.

As you can probably guess, I’m a little jaded when it comes to the introduction of new psychiatric labels. And I’ll cite some historical examples of the harmful and grossly negligent use of diagnosis to explain why. In the mid-1800s, psychiatrist Samuel Cartwright (who, ironically, was mentored by the mental health reformer Dr. Benjamin Rush) wrote a book titled Diseases and Peculiarities of the Negro Race. In this book, he identifies two “mental disorders” involving Black slaves. If a slave didn’t work hard, or was perceived to be lazy, he or she might be diagnosed with dysaethesia aethiopica.  If, however, a slave tried to run away (or even express a desire to flee), he or she could be diagnosed with drapetomania. Both of these disorders, according to Cartwright, had their roots in the Bible – if a slave were truly following God’s will, his reasoning went, then that slave would work hard, be obedient to his or her master, and have no desire whatsoever to run away. These diagnoses functioned, in essence, as a way to police behavior among marginalized people.

I can give you another example. Take the homosexuality diagnosis, which was listed in the 1952 edition of the DSM as a “sociopathic personality disturbance.” After a series of protests by gay rights activists, the homosexuality diagnosis was ultimately removed from the DSM in 1973. However, what appeared in its place was a diagnosis called ego-dystonic homosexuality, which means that being gay causes you “clinically significant distress.” (As an aside, I think a lot of LGBTQ people, even today in 2014, experience “clinically significant distress” when first realizing their identity.) In 1987, the American Psychological Association passed a resolution opposing the use of the DSM-III diagnosis of ego-dystonic homosexuality and the ICD-9 diagnosis of homosexuality (which still existed at the time). The DSM eventually dropped the ego-dystonic homosexuality diagnosis, and while the ICD-10 no longer includes homosexuality as a diagnosis, a person can still be diagnosed with ego-dystonic homosexuality under that taxonomy.

I wish I could say all of this is ancient history, but unfortunately it’s not. In DSM-III-R, when the diagnosis of ego-dystonic homosexuality was removed, a new diagnosis called gender identity disorder found its way in. The diagnostic criteria for this disorder included, according to the DSM:

A strong and persistent cross-gender identification;

Persistent discomfort about one’s assigned sex or a sense of inappropriateness in the gender role of that sex;

Marked preoccupation with cross-gender activities.

DSM-5, interestingly, no longer contains the gender identity disorder diagnosis – largely because of the efforts of transgender activists and their allies. However, a new diagnosis – gender dysphoria – quietly snuck in. Although there are a few technical differences between gender identity disorder and gender dysphoria (including the fact that intersex people are now included under the gender dysphoria criteria, much to the chagrin of many intersex activists), there’s one major difference, which is summed up in a memo issued by the American Psychiatric Association: “It is important to note that gender nonconformity is not in and of itself a mental disorder. The critical element of gender dysphoria is the presence of clinically significant distress associated with the condition” (emphasis added). Clinically significant distress. Sound familiar? Certainly sounds like history repeating itself to me.

Let’s recap. Homosexuality was a disorder. Then it was replaced with ego-dystonic homosexuality. Then ego-dystonic homosexuality wasn’t a disorder, but it was replaced with gender identity disorder. Then gender identity disorder wasn’t a disorder, but it was replaced with gender dysphoria. The next thing we know, the inattentive form of attention deficit hyperactivity disorder will be eliminated, but it will be replaced with – you guessed it – sluggish cognitive tempo, daydreamy-spacey subtype.

I firmly believe in the positive power of diagnosis. If you are struggling with a strange collection of psychological symptoms, identifying a syndrome that involves those symptoms can be incredibly validating (oh wow! This thing I have actually has a name!), and potentially indicate what treatments might help. However, once a person received a diagnosis – especially one that’s stigmatizing – it has the potential to stick with them throughout their lives (read David Rosenhan’s classic article “On Being Sane in Insane Places” for some perspective on this). Moreover, if a person is being diagnosed solely because they don’t conform, and if society’s reaction to that nonconformity is causing “clinically significant distress,” we need to reconsider whether the diagnostic label empowers the person, or if it oppresses them even further.

 

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10 Comments

Filed under gender nonconformity, intersex, mental health, psychological research, racism, transgender, transphobia

10 responses to “Sticky diagnostic labels

  1. Khai

    I’ve been diagnosed with gender dysmorphia syndrome. I identify as trans, and yes, I have significant clinical distress because of a persistent inability to identify with my assigned sex. The label lets me get treatment, including testosterone replacement therapy and, hopefully sooner rather than later, breast reduction surgery. In that way, it’s a tool that I use and like.

    • Thanks, Khai, for your thoughtful response. You’re absolutely right – receiving a diagnosis is a critical pathway to treatment, which is one of the things that many in the trans community fought to preserve. Even the members of the DSM Working Group made that argument in defense of their revisions. However, it still involves receiving a diagnosis, which can stay with a person forever. It also doesn’t guarantee that the treatment the person wants is what they will get. Kenneth Zucker and Ray Blanchard, two of the members of the DSM Working Group, are part of a gender clinic in Toronto that is notorious for turning away transpeople who desire surgery or other biological interventions, and they have both supported the idea of gender-reparative therapy. This is where the issue of power comes in – the clinician has the power to diagnose and the power to choose the treatment. Many transpeople have the same experience as you – the diagnosis opens up a wide array of empowering treatment options. But unfortunately, some do not. WPATH has fought really hard for diagnosis to be irrelevant and unnecessary for transpeople who want to transition, and therapists who follow the WPATH guidelines, in most cases (except for the bottom surgery), have no need for the DSM diagnoses.

      • Khai

        I’m not disagreeing with you, merely stating that within the current system there are ways to work towards a better life.

  2. Sluggish Cognitive Tempo sounds exactly like me throughout my childhood. Although I was labelled as having ADD, anxiety and depression. Not that I don’t think those psychological disorders are real, but I really question the usefulness of these labels on kids regardless of gender identity/preference. I didn’t do well on Ritalin and it seemed like if pills didn’t work they didn’t really know what else to do with me.

    • I think your experience illustrates exactly why there’s a problem with our current diagnostic enterprise. “If pills didn’t work, they didn’t really know what else to do with me.” When I entered graduate school, medications were viewed as one of a wide range of tools available to help people. Now, two decades later, the mental health landscape has changed so dramatically. You might have benefited from alternative learning approaches, or behavioral interventions, or even simply accepting the fact that processing just might take longer. Either way, the diagnostic label sticks, and that can have a lasting impact.

  3. I have rarely been ashamed to be in this field, but I may have gotten there with this news, Gayle. I had earlier struggles with shame over GID and ADHD, particularly when I found the latter was liberally used for young people of color — used to an extent that I wonder if the Larry P case were ever fought and won. Seriously, what can one do when a industrialized medication complex relies on diagnoses like these to feed its investors?

    • Gary, it’s hard for me to believe that I’m the first one who has burst your bubble of idealism! Seriously, though, when I read this article in the New York Times, I actually wondered for a moment if it was satire. But unfortunately, these people are dead serious – and the journalist who wrote the article quoted representatives from Eli Lilly quite liberally. Shame on the Times. Funny – when I entered graduate school in 1994, I did so with a strong sense of social justice, knowing that the field of psychology has the potential to empower people towards better lives. I still feel that way, and in many ways I’m still an idealist. However, I also think that the mental health field as a whole needs to reclaim our power and potential, because it’s being stolen from us by the “industrialized medical complex” you referred to in your comment.

  4. I hope I haven’t been living in a bubble, Gayle, and you certainly haven’t burst it. But your article evoked a feeling of shame, a feeling I dislike and avoid in part through social activism. But I completely missed this newest scourge on us all.

    It is as though we have once again watched fracking, literal disenfranchisement, scorching poverty, racial hostility and a host of other reasonable sources of sluggish cognition slide in favor of diagnosing it so that a leach can be placed on individuals whose lives are made less holy by the very corporations who purport to be saving them.

  5. Carl Sjovold

    I read the same article about “Sluggish Cognitive Tempo” and had a similar response: “Oh my gosh, here we go again. And someone is going to try to sell us some pills to deal with this….” I’m quite sure that our son, Paul, would be diagnosed with this condition, which he probably inherited from his father. Paul daydreams a lot, especially when he does his math homework. His lack of focus is an issue insofar as his test scores at school are not so good, but my wife and I refuse to let these rather crude institutional measures define him as an individual. We’re deeply reluctant to give him any one of the medications that are available for this. He’s a happy, good-natured kid with lots of friends and a good sense of humor. Our preference is to help him understand that when he’s doing his homework, he needs to make an effort to stay focused, because this ability doesn’t come naturally to kids when they’re doing something that doesn’t interest them. We hope that this will teach him that there’s a time for self-discipline and a time for daydreaming.

    • Glad to know I wasn’t the only one who reacted cynically to the New York Times article! Of course, some parents in your situation would choose the medication route, and others wouldn’t. Either way, it involves receiving a diagnosis that is possibly stigmatizing, which has the potential of doing more harm than good. When I was in graduate school, I had the privilege of getting a strong grounding in feminist theory, particularly as it applies to research methods and ethics. There are serious ethical considerations every time a diagnosis is issued, and understanding how power plays into this dynamic is critical. Paul may have “sluggish cognitive tempo” when it comes to his math homework (and I can totally see how this could be a problem). But if he can channel his daydreaming into productive creativity (in whatever form), then it actually can be a strength. It’s also really clear that math is not his thing. I, on the other hand, did well in most subjects in school, and because I was good at a lot of things, it took me a while to see the difference between “enjoying something” and “being good at something.” I was in no danger of receiving a diagnosis as a kid, yet I ended up struggling a bit in my first couple of years in college because of this. Had this been pointed out to me earlier, I think it would have saved me a lot of strife.

      Thanks for reading- and commenting!

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