What’s in a Name?

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.

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4 thoughts on “What’s in a Name?

  1. Thanks for sharing your perspective Sarah. On the Autism spectrum disorder vs. Asperger’s front I can see both sides of the issue. That change has been so foremost in the news that I hadn’t heard about the other one, but I am glad of it. It does seem that bi-polar is the “in” diagnosis right now. I know a few people (including myself) who have been diagnosed with it and I just don’t think that the symptoms always fit the actual disorder.

    As for the question, “what’s in a name?”, my answer would be “a whole lot”. Having a child who has been diagnosed with some very scary sounding names I constantly fear the impact of those labels on her in the public sphere. Names have strong associations with them, and particularly mental disorders are very much misunderstood (thank you popular television). I hate to think that my child will some day be judged by someone, a teacher, principal or other parent, not based on herself but based on a label.

  2. Hmm. I’m less rosy about these changes, but maybe for different reasons. First of all, aspie has become a subculture, an identification, which might be harder to find once that label is gone. Also, with my family history, if its not bipolar .. . i wish someone would figure out what it was. My son wasnt tantruming, tho. At 9, he was suicidal and having panic attacks, and even a bit paranoid. He’s been given 9 different dx’s by 3 different practitioners. atypicals allow him to function . . . well, at home, anyways.

    • I can see your concerns. The interaction between culture and the DSM is interesting: how much does current culture drive what we call normal and abnormal and how does the language in the DSM shape our responses to certain conditions. I have a kid on that AS line, and calling him autistic would seem inappropriate, but that feeling may be driven by the line in the sand drawn between AS and autism in the DSM, the media, and general culture. Additionally, the proposed criteria don’t remove the bipolar diagnosis but add a new catagory that (in my clinical opinion) better describes many kids currently labeled bipolar. But not all. The atypicals are helpful for more than just bipolar kids — they can help in many circumstances (some kids on the autism spectrum find assistance from them). My cconcern is the huge number of children labled as bipolar (who don’t truly fit the criteria) and then end up on these meds, since they are standard treatment for bipolar kids. I’m not against atypicals as a class — they’re enormously helpful for many patients, and I’m glad they’ve helped your son.

      I think we’ll see changes over the next 20 years or so that clarify what’s going on the the brain when we see signs of mental illness (I like the http://eideneurolearningblog.blogspot.com/ site). Better understanding should lead to more effective treatments. In my opinion, the label matters little as long as it helps rather than hinders treatment for the child. I’d like to see more focus on the particular deficits and challenges of the child and treating those effectively, with cognative behavioral therapy, ABA, OT, PT ST, vision therapy, meds, whatever’s proven to work. I’m all for what works and less for making sure we cluster the symptoms conveniently so we can name something. From your blog, you’ve obviously worked hard to find the best solutions for your family (and what’s best certainly changes with time, doesn’t it?). That’s the goal.

      -Sarah

      • Thanks! I have to say i’ve started referring to my son as autistic/bipolar partly because it flows so much better than pddnos/bipoloar and its sort of attention getting lol.

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