About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Tuesday, June 30, 2009

Another Esoteric Post About DSM-V

Remember those proposed revisions to the DSM?

Hold the phone. Apparently, a shitstorm is brewing.

Dr. Allen Frances, who headed the DSM-IV task force, fired the opening salvo with this blistering criticism. He writes:

Undoubtedly, the most reckless suggestion for DSM‐V is that it include many new categories to capture the milder subthreshhold versions of the existing more severe official disorders. The beneficial intended purpose is to reduce the frequency of false negative missed cases thus improving early case finding and promoting preventive treatments. Unfortunately, however, the DSM‐V Task Force has failed to adequately consider the potentially disastrous unintended consequence that DSM‐V may flood the world with new false positives. The reported rates of DSM‐V mental disorders would skyrocket, especially since there are many more people at the boundary than those who present with the more severe and clearly "clinical" disorders. The result would be a wholesale imperial medicalization of normality that will trivialize mental disorder and lead to a deluge of unneeded medication treatments‐‐a bonanza for the pharmaceutical industry but at a huge cost to the new false positive "patients"caught in the excessively wide DSM‐V net. They will pay a high price in side effects, dollars, and stigma, not to mentions the unpredictable impact on insurability, disability, and forensics.

* * *

A third category of DSM‐V innovation would create a whole new series of so‐called "behavioral addictions" to shopping, sex, food, videogames, the Internet, and so on. Each of these proposals has received little research attention, and they all have the potential for dangerous unintended consequences, by inappropriately medicalizing behavioral problems, reducing individual responsibility, and complicating disability, insurance, and forensic evaluations. None of these suggestions are remotely ready for prime time as officially recognized mental disorders.

I do not have space to enumerate the dangers of all the other innovative suggestions for DSM‐V, but I will list just some of the riskiest that require the most careful review and caution: adult attention‐deficit/hyperactivity disorder (ADHD) and adult separation anxiety disorder; making it easier to diagnose bipolar disorder; pediatric bipolar, major depressive, and trauma disorders; autism spectrum disorders; new types of paraphilias and hypersexuality disorder; and the suggested rating list to evaluate suicidality. [Emphasis added.]

Nice, huh? Sensory processing disorder inspires skepticism, and its inclusion is predicated on copious research. But shopping addiction? That's pathological! Maybe we should dress our sons in Manalo Blahniks? Label that, doc!

You can read the American Psychiatric Association's rebuttal here. The rebuttal has been criticized for its uncivil tone, and lack of substance.

To learn more, read DSM V Badly Off Track.

Source: Michelle Dawson's Twitter account


Saja said...


This spins me right into a deeply metaphysical internal thinking process on the purpose of the DSM-V. Is it solely to identify pathological psychological manifestations, where pathological means drastically interfering with one's ability to live a fulfilling life and/or to refrain from hurting others? Should it even begin to describe the variety in personal wiring and makeup that lives somewhere above this level?

I think the answer there should be 'no', in which case the proposed autism spectrum revisions I like so much are, indeed, on the wrong track. My autism brings me challenges, sure, but every life has challenges. If (high-functioning) autism is just a different but equally valid way of being wired, it would be best if it weren't included in a manual of pathological psychological disorders. To include the higher end of the spectrum is to say we are not normal, and something about our wiring is "wrong"--moving in the opposite direction from a definition of "normal" that is broad and encompasses non-disruptive differences.

Sort of like having a manual for aberrant hair color: brown is normal, so it isn't in the manual. Light brown is on the border, blonde and red totally pathological and in great need of diagnosis and treatment. :-)

Laura said...

Yes, "pathological" takes on a whole new meaning. It is metaphysical. It's also social responsibility - those in charge of the DSM revisions are, in some respects, stewards of our children's well-being. And I'm starting to think they're abusing that power. The insularity of the process, and the connotation of arrogance, in particular are rubbing me the wrong way.

Kris said...

I don't even know what to say...I find this so troubling. NO wonder I am so confused about my son's behavior, the different diagnoses he has received from different specialists, the lack of help from the school, all of it. The bottom line is even the so-called professionals don't agree, particularly (and maybe only) in the "gray areas" of diagnoses - ie: the "autitic-like" as opposed to the classic autistic.

Having a child with mild/moderate ADHD which manifests mostly as disorganization, and trouble focusing and a child with severe ADHD, SPD and who is "autistic-like", I have 2 children who fall into these gray areas that this doctor is writing about - the ones who may receive a diagnosis that is defined too broadly. My hope for both of them is that they will eventually learn to cope with their symptoms and compensate for them without meds, therapy, etc. (My older son is now off his meds - fingers crossed he can stay off when school starts). These "disorders" are part of who they are, part of their personality. I think they are disorders as long as they are interfering in daily life. My older son is close to overcoming many of his symptoms. I am hoping he can truly "outgrow" the ADHD label or at least learn to compensate. At this time, however, I do believe they are both correctly diagnosed with disorders as defined in the DSM-IV.

However, I can see the other side as well - where every kid who is a bit quirky could fit into some diagnosis. There does need to be some room for differences in personality and ability. Every "nerd" does not have Asperger's, every active kid does not have ADHD, every moody kid does not have bipolar disorder.

I still am very frustrated by all the conflicting test results, opinions, etc that I get concerning my son with SPD. He proves (as do many other kids in the gray area) that no one fits neatly into a diagnostic box and you have to look at the WHOLE BIG picture to figure out what is going on.

Two pieces of advice that were most helpful to me:
1. Get diagnosis from a professional who specializes in ASD, sees it every day and knows it when they see it.

2. Treat the symptoms, not the disorder.

Kris said...

Oh, and don't even get me started on the personal responsibility piece. It seems so many people don't want to take responsibility for their bad behavior - they would rather blame some type of addiction. This is one of my biggest worries with my kids - I don't want them to ever think they can make poor choices or shirk responsibility and then say it is because they have ADHD. I struggle DAILY to figure out if behavior problems are a true result of SPD/ADHD or just plain old bad behavior. I am sure I am wrong a lot but I try my best.
I hope I don't sound too judgemental - I have alcoholics in my family and don't blame them for their addiction but there has to be some level of personal responsibility. Everyone struggles with something, most people don't have disorders or addictions.
Ok, I'm done now!

Nyx said...

isn't there some irony here? wasn't dsm-iv responsible for opening the floodgates in the first place? It seems to me that there has to be a difference between diagnosing adults and diagnosing children. With adults, I would think you start by asking whether they have problems that impair their ability to take care of themselves, or seriously interfere with an ability to experience contentment and fulfillment. We all have problems with the latter but usually it's environmental, right? But some people would struggle no matter what, and that has to be their wiring. But with children who seem happy and content and who are too young for self-care anyway, your only goal is to try to keep them on track for a better adulthood, but then that requires a crystal ball. How do you tell whether a 2 year old who isn't talking will be "just fine" or had better get some help? An awful lot of people are impressed by whether or not a child can "make it" in a modern day classroom, but I personally think that is inappropriate, because that is obviously an environmental problem in many instances. To my mind, a child who can learn and thrive in SOME environment is probably just different, not disordered.

Anyway, are we sure that people who work with autistic kids all day are the ones who ought to be doing the diagnosing? These people see PDD everywhere they look. (So do a lot of autism parents.) Sometimes I wonder whether these people know how to recognize a NORMAL kid. A screener tried to convince me to take my NT son to see a developmental pediatrician a few weeks ago because he is -- I think -- something like 3 months behind the standard timeline. LOL. Some people do not know what the word "average" actually means...

this is the son who makes trying to do Floortime with the other one impossible because he has no ability whatsoever to play by himself: "Chase!" "Chase!" "Chase!" he cries. (begging someone to play tag.) "sugars! sugars! sugars!" (begging for hugs and kisses). sure. he's on "the spectrum." right.

{this is totally subjective, but I have a hard time taking seriously anything that has acquired a catchy moniker like "the spectrum." Sounds like some bad prime-time tv show.}

Laura said...

Kris, the two little nuggets at the end of your first comment are sage advice, as usual, which I take to heart. On your second comment, yeah, none of us want a label to become a crutch, which is part of the reason the Mislabeled Child is such a nice resource with its message of positivity and strength without denying difference and the need for some accomodations.

Nyx, LOL...the "Spectrum"...in the tradition of the "Mentalist"! btw off topic: if you haven't rented it, you must see Forgetting Sarah Marshall - brilliant satire of procedural drama. Brilliant.

To your substantive point, you'll note that Dr. Francis acknowledges and owns the shortcomings of DSM-IV and cites that fallibility as a reason for putting the breaks on DSM-V. I mean, he's the one who came up with near-universally loathed "PDD-NOS". His point: he empirically studied things like PDD-NOS, but didn't appreciate the "unintended consequences" that would ensue. Learn from his mistakes. And yes, some people probably do see autism everywhere...

Nyx said...

Thanks for the recommendation! It looks hilarious, and hopefully like a good Brain Vacation, which I badly need.

indigo said...

laura. yet again the right post at the exactly the right time. thankyou.

*twitches with rage*.

Anonymous said...