Last week, I listened to NPR about the proposed changes to the Diagnostic and Statistical Manual of Mental disorders (DSM-5) with mixed reactions. The DSM catalogues mental disorders, listing diagnostic criteria for the disorders. The manual changes from time to time, with diagnoses being eliminated, added, or absorbed by other diagnoses. It’s been 16 years since the last major revision; the first revision since I’ve been a practicing PA (I certified at the end of 1994) and since I’ve been a mom of two kids with diagnoses in the book.
Numerous possible changes are under consideration, but two caught my attention. Asperger’s and PPD-NOS (pervasive developmental disorder- not otherwise specified) may both be eliminated and placed under a revised Autism Spectrum Disorder diagnosis (NPR: Asperger’s Officially Placed Inside Autism Spectrum), and temper dysregulation disorder with dysphoria may be added, largely to cut down on the ever-growing number of children diagnosed as bipolar (NPR: Children Labeled as ‘Bipolar” May Get New Diagnosis). The DSM-5 Development website explains the proposed changes in-depth and invites comments through April 20, 2010.
My younger seems to sit, depending on the day and the evaluator, on the edge of what is now Asperger’s, or at least PPD-NOS. The proposed criteria for Autism Spectrum Disorder seem rather vague, although given its goal of encompassing more children under one umbrella, perhaps “broad” is a better descriptor. I know some parents bristle at the term “autism”, preferring the more mild-sounding Asperger’s, but what’s in a name?
Perhaps quite a bit. Specific nouns paint a brighter image in the reader’s mind, thus they are preferable to a general noun stacked with adjectives. Sure, the line between high-functioning autism(HFA) and Asperger’s is fuzzy and probably all in the eye of the diagnostician. And sure, some kids diagnosed with HFA function better than kids diagnosed with Asperger’s. Perhaps it makes procuring school services easier for kids with more mild symptoms who might be overlooked as not needing assistance with the DSM-IV criteria. Perhaps we’re still missing the point.
As a parent, I don’t care what my son’s collection of quirks is called, but I do care he gets the help he needs. And the longer we’re in the alphabet soup diagnostic name game, we’re wasting time. Were he in school where services for him would be available, I’d likely feel stronger about the diagnosis given, but as a homeschooling parent, I just want solutions (or at least guidance) on what will help him make his way through life feeling peaceful and capable.
My interest in the addition of temper dysregulation disorder with dysphoria is more professional than personal. When working full-time, 16 years ago, I never saw a child diagnosed with bipolar disorder. Many with ADHD, some with anxiety or depression, and a few with autism (before Asperger’s came in vogue), but not bipolar disorder. My adult patients diagnosed as bipolar fit the label well, with discrete, long-lasting periods on mania and depression. In recent years, I’ve seen many kids labeled “bipolar”, sometimes by specialists but sometimes by primary care (I feel this diagnosis belongs with the specialists. The average 10 to 15 minutes office visit in primary care is insufficient for almost psychological evaluation. Screen and refer is my policy.) The label just doesn’t work for them. Most of the children are prone to temper tantrums and explosive rages, sometimes severe and seemingly unpredictable, and they’re generally negative children. Even the rapid cycling variant doesn’t cover these kids (rapid cycling refers to 4 more event of mania, hypomania, or depression a year, not mood swings several times a week). The newly proposed temper dysregulation disorder with dysphoria seems a better fit for many of these kids, although in my opinion, definitive pediatric psychiatric assessment belongs in specialty hands.
But what’s in a name? Sometime quite a bit. True bipolar disorder carries a fairly signficant morbidity in adults with significant risk of suicide attempt and successful suicide. The mainstay of treatment is medical: mood stabilizers and antipsychotics on the front line while cognitive behavioral therapy taking a backseat. Treating reactive, impulsive, inattentive kids prone to depressive moods with those same powerful drugs because the kids are labeled Bipolar risks neglecting their true needs while putting them at serious risk of complications to medications not always studied on children. The current diagnosis of these children possibly (I feel probably) decreases their chances of receiving proper help because it places them with the wrong group: adults with true bipolar disorder. The current name casts too big of a net, pulling children with disparate issues under one heading increasing the chance of treatment error.
The names matter, and I, for one, will continue to closely watch the formation of DSM-5. In the case of dropping Asperger’s for Autism Spectrum Disorders, the name issue simplifies diagnosis, and, as far as I can see, shouldn’t block treatment paths for those on either end of the spectrum. As for the addition of temper dysregulation disorder with dysphoria, the new name and category offers a more accurate description of many children now called bipolar and could lead to new approaches to helping these children. For more information on the proposed changes with notes on current categories, visit the American Psychiatric Associations DSM-5 page. Log in and comment through April 20, 2010, because names matter.