DSM V and Diagnostic Woes

THE NEW DSM IS OUT AND I HAVE A COPY OF IT! For those who don’t know, the DSM is the Diagnostic and Statistical Manual, essentially the bible of Psychology. It’s what’s most often used to diagnose someone, and if you want insurance to cover treatment you generally need a DSM diagnosis. They’ve been in the midst of some pretty contentious updates for a long time, but I now have my hands on the brand new copy of the DSM-V.  Mmmm, tasty.

 

Of course when I got ahold of it I spent a good half an hour paging through and self-diagnosing, but after that diversion, I moved over to the eating disorder section to see what updates had actually gotten through and how they had phrased them. I was happy to see the inclusion of Binge Eating Disorder, as well as Night Eating Disorder and Purging Disorder as new categories in the manual, but when I looked back at our old favorite anorexia I was…annoyed.

 

One of the most contentious points in the DSM IV was the weight criterion for anorexia. While this has been removed from the current version and replaced with the following: “a significantly low body weight in the context of age, sex, developmental trajectory and physical health. Significantly low weight is defined as a weight that is less than minimally normal, or, for children and adolescents, less than that minimally expected,” there is a scale to determine the severity of the disorder. This scale is entirely based on BMI, with the caveat that a psychologist can make adjustments if necessary. And I must say that the numbers listed on that scale are INSANE. To be considered a moderate case, your BMI needs to be between 16 and 17.  My BMI has never been even close to that. While I generally dislike numbers, and I am going to insert a HUGE TRIGGER WARNING right here, when I was at my worst I literally would go for a week without eating at times. I never ate two days in a row. I was seriously ill. However my body weight never dropped into what would be considered technically underweight by the BMI scale. I would have been considered a mild case, even if I had gained the diagnosis at all (as it stands I was diagnosed with EDNOS because of the weight criterion in the DSM IV).

 

We have gone over and over the harms that come from including weight as a criterion of an eating disorder. First and foremost, it keeps people from getting treatment until they’re already too sick, which is unhelpful to everyone involved. It ignores how different bodies react to starvation. It ignores that people’s weight can fluctuate throughout the disorder or treatment. It’s simply unrealistic. But more than anything, I feel like it shames those people who never get that diagnosis. It tells them that their pain and suffering wasn’t real unless they hit the magical BMI of 17 marker. And I am so disappointed in the writers of the DSM that they would ignore all of the feedback they’ve received from the eating disorder community and still include BMI criteria for anorexia. I’m so disappointed that after all the research and stories and experiences that people have shared that illustrate that an eating disorder is not about weight, we still have to reduce to such. And most of all I’m disappointed that until the next rewrite, more individuals will be stuck trying to navigate a system that reduces them to their weight, even as it’s trying to convince them that they should stop doing that.

Frustrations with the DSM

I live in a very psych oriented world. I work for a nonprofit that provides services to kids with autism and developmental disabilities and general mental health problems. I spent at least five hours a week in therapy. I talk a lot about mental health, I care a lot about mental health, and a few of my friends and I just started throwing around the idea of creating a skepticism and psychology conference (SO EXCITED). So I’m thinking (as per usual) about mental health.

One of the talks at SkepTech (by the fabulous Stephanie Zvan) was about psychometrics, which is “The science of measuring mental capacities and processes.” She talked a fair amount about how we often define certain disorders based on our stereotypes: we view autism as a boy’s disorder, so the diagnostic criteria are slanted towards how autism presents in boys. I think this is a very important thing to address (especially in terms of race. UGH), and I think the place to start is with the DSM (the psychology diagnostic manual). The DSM is very much a quantitative measure. For eating disorders for example, it lists particular weights, numbers of binges and purges per week, and length of the persistence of the disorder as diagnostic criteria. In many ways, these concrete diagnostic tools are incredibly helpful: they allow insurance to see who to treat or not and they allow clinicians to have something more solid than personal judgment to use in their diagnoses. That’s important. We do need some element of consistency, we need some science in our diagnostic tools.

The problem shows up in the fact that many of these diagnoses are written around what is considered the typical case and doesn’t necessarily allow for any variation. It also doesn’t address the fact that many people have lots of symptoms that don’t quite fit into a neat diagnostic category. In many ways it’s far too rigid. Diagnoses that involve NOS (not otherwise specified) often aren’t covered by insurance, aren’t included in research, and aren’t afforded as much respect as serious problems by clinicians or the individuals diagnosed.

This is a really big deal because it limits who can access mental health care based upon demographic or personal variation. Males with depression generally exhibit it in very different ways from females, and they are not diagnosed as often because they aren’t viewed as the typical depression sufferers. People of color are not diagnosed with eating disorders nearly as often as white girls (particularly teens).

So how can we both create helpful categories AND capture the wild diversity of mental illness? How can we approach mental illness not as a checklist of symptoms that we address and move the individual back to the neurotypical end of the spectrum? First and foremost, insurance needs to NOT be tied to strict diagnosis. That is not fair to individuals who might need preventative therapy or interventions, or those who want to catch a disorder before it becomes so serious that it interferes with their life. It is also not fair to those individuals who have a serious mental illness that is wreaking havoc on them, but who don’t fall neatly into a category. But it’s also unfair to those who DO fall into the category, because it might ignore any other symptoms or problems that could be contributing to their diagnosis. OF COURSE labeling some patterns and similarities can be helpful because it allows us to conduct research and to develop treatments that work for people with similar issues. But these labels should not be considered so strict, should not be the only guide we have in treatment, should not have such harsh boundaries, and should allow more movement between diagnoses. They should be guidelines (the code is more like guidelines than actual rules).

There should also simply be more cross-cultural research. Right now we have very Western-centric views of psychology as well as very white, male views of psychology (thanks Freud). We need to focus on evidence based treatments, and we also need to simply be willing to have MANY types of treatment available for people who are exhibiting different symptoms because of their demographic. We need to have psychologists who are social justice aware: personally I think that sociology, women’s studies, and race studies classes should be required of every psychology major. It is SO important to improve our mental healthcare system, and the first place we need to turn is how we determine who needs mental healthcare.

If we’re being honest? EVERYONE. Mental healthcare isn’t about turning people into the neurotypical. It is about improving functioning. Everyone could use a mental health checkup, just like they have a physical health checkup to make sure they’re functioning like they should and to catch any worries or glitches before they turn into something serious. We need a paradigm shift that no longer sees diagnoses as identifying problematic difference to seeing diagnoses as identifying problems with functioning that require help.

NOTE: they are trying to adjust some of these problems in the latest update of the DSM, the DSM-V which is coming out in May.