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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I wrote a children’s book!

For those of you who read The Active Voice regularly, you may have noticed that I’ve been discussing children’s books quite frequently lately. And you may be wondering why. Well, here’s why.

I WROTE A CHILDREN’S BOOK! And it’s going to be released in early May! (picture me clapping and jumping up and down)

OK, now let me connect the dots. Writing children’s stories has become a side hobby, and I’ve written probably a dozen or so. But this one is different. And a few weeks ago, I read two articles that crystallized for me why these “different” kinds of children’s books are so important. Read on.

* * * * * * * * * *

In 1969, when I first entered the world of writing children’s literature, the field was nearly empty. Children of color were not represented, nor were children from the lower economic classes. Today, when about 40 percent of public school students nationwide are black and Latino, the disparity of representation is even more egregious. In the middle of the night I ask myself if anyone really cares.

The person who asks “if anyone really cares” is Walter Dean Myers, author of several children’s and young adult books, including the widely acclaimed novel Monster. This past March, he and his son Christopher Myers (a children’s book writer and illustrator) wrote a pair of articles for the New York Times Book Review about the lack of diversity in children’s books: “Where Are the People of Color in Children’s Books?” (which is where the above quote came from) and “The Apartheid of Children’s Literature,” respectively. Both articles were shared widely on the Internet (they showed up on my Facebook news feed several times that week), always generating a wide variety of comments and discussion. One comment I read made a point that’s stuck with me: “Publishers often say that they’re committed to diversity. If that’s true, then where is it?”

This is what Christopher Myers says on that issue:

The mission statements of major publishers are littered with intentions, with their commitments to diversity, to imagination, to multiculturalism, ostensibly to create opportunities for children to learn about and understand their importance in their respective worlds. During my years of making children’s books, I’ve heard editors and publishers bemoan the dismal statistics, and promote this or that program that demonstrates their company’s “commitment to diversity.” With so much reassurance, it is hard to point fingers, but there are numbers and truths that stand in stark contrast to the reassurances. The business of children’s literature enjoys ever more success, sparking multiple movie franchises and crossover readership, even as representations of young people of color are harder and harder to find.

For the past three years, I’ve attended a Northern California regional conference sponsored by the Society of Children’s Book Writers and Illustrators (SCBWI). At each of these conferences, diversity and multiculturalism have been major topics of conversation. And every single year,  I hear editors talk about their publishing house’s “commitment to diversity” (broadly defined). They want people to submit manuscripts that feature people of color, or LGBTQ people, or people with disabilities. One editor I met at last year’s conference lit up when I told her I’d written a couple of stories about LGBTQ issues. “Send them to me!” she said. An agent I met at that same conference had a similar reaction – she was ready to take me on almost immediately. I left that conference feeling like there wasn’t just a “commitment to diversity,” but that editors would jump at any chance to diversify their offerings.

So here we are, a year later. And the diversity, well, just isn’t there. In fact, the lack of racial and ethnic diversity in children’s books, according to a study by the Cooperative Children’s Book Center at the University of Wisconsin-Madison, has gotten worse in recent years. The number of LGBTQ-themed children’s books is harder to pin down, since no one seems to be tracking these numbers. From my vantage point, a lot of LGBTQ-themed books seem to be about two-mommy/two-daddy families or gender nonconformity, and a good number of them are self-published. The big publishing houses (including the one represented by the editor I met at the conference) just aren’t putting children’s picture books out there that reflect the identities of their readers.

Why is that? My guess is that publishers fear two things: avoidance and aversion.

First, the avoidance. With respect to race and ethnicity, publishers may fear that White people won’t read books about people of color, and that diversifying their booklist will come at a significant economic cost. (Interestingly, Nikki Grimes, who was a keynote speaker at this year’s regional SCBWI conference, shared many letters from White middle-class kids who read her books and loved them). If people don’t buy books, then publishers don’t make money – and a lot of books need to be sold in order to post a profit. Moreover, there may be an implicitly racist assumption that people of color are less likely than their White counterparts to read – and if that’s the case, then profits will take a significant hit. (Walter Dean Myers writes quite candidly about why he gave up reading for a period of time.)

It’s bad enough if people avoid something; it’s even worse if there’s an aversive reaction. Quite possibly a fear of aversion may be behind the lack of LGBTQ-themed children’s books – particularly because they’re aimed at children. Anti-gay organizations often make inflammatory, inaccurate claims, many of which revolve around perceived effects of homosexuality on children:

Homosexuality threatens the institution of marriage in America, which will have devastating effects on children.

If children are raised by gay parents, they will become gay themselves. 

Children are subjected to harmful pro-homosexual propaganda in schools, which increases the likelihood that they will choose this lifestyle. 

By logical extension, the fear is children who read pro-LGBTQ children’s books will be harmed by them. Which is a Big Lie. The reality is that children and adults benefit tremendously from LGBTQ visibility in children’s books – and, consequently, are negatively impacted by the absence of these stories.

* * * * * * * * * *

So. Guess what? I have a children’s book coming out in a couple of weeks. (YAY!!!! Picture me clapping and jumping up and down.)

It’s called This Day in June, and it is, according to the book description, “an uplifting and upbeat book that shares the experience of attending an LGBT Pride festival and a day when everyone is united.” It includes a section at the end with information about LGBTQ history and culture, and it also has a guide for parents and caregivers about how to talk to children about gender identity and sexual orientation.

Why did I write it? If Walter Dean Myers were to look me in the eye and ask me if anyone really cares, I would want to have integrity in my response. A change in the course of children’s literature is way overdue. It’s time to dramatically diversify the representations in children’s books. It’s time to challenge and demolish the myths that anti-LGBT organizations have perpetuated – and that many of us have internalized on some level. It’s time for publishers to walk their talk, and demonstrate a commitment to diversity. And I want to be a part of that.

You can pre-order This Day in June from Magination Press or at www.amazon.com.

 

Externalizing the problem

My daughter’s been going through a bit of a temper-tantruming phase. (She’s six years old – isn’t this supposed to be over by now?). Recently, when we were trying to give her a bath and get her ready for bed, she lost it. TOTALLY lost it. I’m not exactly sure what the trigger was, but one moment she was reasonably calm, and the next moment she was screaming at the top of her lungs and flinging herself onto the floor. Later, when I asked her what had upset her so much, she very calmly said, “Mad Voice got control over me. I couldn’t stop him.”

Mad Voice. I’m sure she didn’t realize this, but that phrase was an invaluable gift. She didn’t personalize her anger at all. Instead, she gave it a name, envisioning it as entirely separate from herself. People call this “externalizing the problem.” You identify the problem (anger), give it a name (Mad Voice), and then construct an entire persona around it. Doing that one simple thing opens up a world of therapeutic possibilities. Now my daughter and I can talk about how to handle Mad Voice when he shows up (or how to recognize when Mad Voice is creeping up on her). And that is incredibly empowering.

I sometimes use this technique when I feel stressed, upset, or angry. Here’s an example: At work, there’s this thing we talk about called “workload creep,” which refers to the ever-growing number of responsibilities added to our jobs, without additional compensation or release time. It’s enormously stressful, as you might imagine, and many of us feel as if there’s little we can do about it. So what do I do? I identify the problem (workload creep), give it a name (Workload Creep), and create a character. (Workload Creep looks a bit like Freddy Krueger.) And then I can deal with it. I can tell Workload Creep to take a hike. If Workload Creep speaks through my computer (e-mail is one of his favorites), I can shut down my e-mail program and silence him so I can get some things done. Amazing, huh?

Now, I did not come up with this terrific technique on my own. That credit goes to Australian psychologist Michael White and his colleague from New Zealand, David Epston. Together, they wrote a book called Narrative Means to Therapeutic Ends, which introduced the concept of narrative therapy to the United States. One of the core foundations of narrative therapy is the idea that the person is not the problem – instead, the problem is the problem. Once you can separate the person from the problem (“externalizing the problem”), you can look at it more objectively, and you can be far more productive in identifying how to handle it.

A great example of narrative therapy in action can be seen in the book Life Without Ed, in which author Jenni Schaefer names her eating disorder (Ed, for Eating Disorder). The book description says this:

Jenni had been in an abusive relationship with Ed for far too long. He controlled Jenni’s life, distorted her self-image, and tried to physically harm her throughout their long affair. Then Jenni met psychotherapist and author Thom Rutledge. He taught her how to treat her eating disorder as a relationship, not a condition. By thinking of her eating disorder as a unique personality separate from her own, Jenni was able to break up with Ed once and for all.

By externalizing the problem, Jenni could treat her eating disorder like an abusive partner (Ed), which then opens up the possibility of leaving Ed.

Now here’s a question: What do Mad Voice, Workload Creep, and Ed all have in common?

Answer: Mad Voice controls my daughter. Workload Creep controls me. Ed controls Jenni Schaefer. They control us, and take away our sense of personal power. On top of that, they have this uncanny ability to make us believe that there’s something wrong with us. The icing on the cake? They do a pretty good job of making us feel utterly lousy.

Hmm. Sound familiar? Think about all of us in the LGBTQ community who have internalized our culture’s oppressive attitudes in some way. So often, these internalized attitudes surface as mental health issues – depression, anxiety, substance abuse, sexual acting-0ut (or inhibition), eating disorders, relationship problems – the list goes on. About a third of LGBTQ youth attempt suicide at some point, which to me is a blatant example of internalized oppression. Just the other day, I read that 42% of transgender individuals have made a serious suicide attempt. Forty-two percent. That’s a huge number of people who see themselves as The Problem.

But we’re not The Problem. If we believe that we are, it’s only because we drank the big jug of heteronormative, cis-sexist Kool-Aid. We internalized mainstream societal attitudes about what’s normal and acceptable. When we externalize the problem, we take our power back. We can see that we are not the problem. Rather, the problem is rooted deeply in oppression. Once we can see that Oppression is the problem, we can heal individually, and fight against it collectively.

The other day, at my daughter’s school, a boy was taunting her and calling her silly names. “Stop!” she said. He continued. “Stop!” she said again, a little more loudly. Still no effect. Finally she walked up to him, literally got in his face, and shouted, “YOU STOP THAT RIGHT NOW, OR YOU’LL BE SORRY!” He withered at that, and walked away.

In the car, I said, “Good for you! You got him to stop.” With an impish smile, she said, “Mad Voice helped me out.”