than the rest of us…

Posted on Wednesday 29 May 2013

We’re barely a week beyond the launch of the DSM-5 and the substantive criticism is beginning to emerge from the din of outrage that they actually went through with it. First, from Dr. Allen Frances an important practical note. There was so much noise about various elements in the Manual itself that the fact that it was hastily edited because they were so far behind schedule didn’t get it’s due:
Two Fatal Technical Flaws in the DSM-5 Definition of Autism
Huffington Post
by Allen Frances

The DSM-5 definition of Autistic Spectrum Disorder has two fatal technical flaws that make it impossible to interpret and use reliably. A truncated version of its Criterion A reads as follows:
    "A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following…
    1. Deficits in social-emotional reciprocity;
    2. Deficits in nonverbal communicative behaviors used for social interaction;
    3. Deficits in developing, maintaining, and understanding relationships."
The DSM 5 examples offered for each of these three items are vague enough to overlap into normality, but I wouldn’t have made a big fuss about this. The really fatal flaw here is that no instructions are given as to whether one item, two items, or all three items must be present to make the diagnosis of Autism Spectrum Disorder. The diagnosis will vary dramatically from rater to rater, institution to institution, and place to place depending on which of these three different possible convention is chosen. It will be even more impossible than it is now to determine rates of autism and why they shift so much over time.

That first one is just sloppy editing, but this next one is… well, it’s just a mess:

The second fatal flaw comes in the following statement attached to the end of the criteria set for Autism Spectrum Disorder:
    "Note: Individuals with a well established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social communication disorder."
This throws wide open to raters the choice of using DSM-IV criteria or DSM-5 criteria depending on their personal preferences. DSM-5 has essentially made it clinician’s choice how to define and diagnose Autism Spectrum Disorder. Some will require one item from criterion A; others two; yet others three; and some will chuck DSM-5 altogether and use the very different definitions that are contained in DSM-IV.

The diagnosis of Autism is already badly muddled. There has been a forty-fold increase in rates in just 20 years. Some of this is due to the introduction of Asperger’s in DSM-IV, some to improved case finding and reduced stigma, but a significant portion comes from loose and inaccurate diagnosis. DSM-5 turns the current confusion into a complete Babel. The impossibly vague and confusing DSM-5 definition of Autism Spectrum Disorder is essentially useless for clinical or research purposes and is not a trustworthy guide for determining school services…

At least Dr. Frances seems to get what they’re saying. I don’t. "badly muddled" is a good choice of words. After all the time they spent talking about Autism, it seems like they could’ve at least been clear about what they intended.

To my way of thinking, these bloopers are emblematic of a more fundamental problem with the manual. It’s not the manual the DSM-5 Task Force wanted to write. They set out to write a biomedical psychiatry manual and failed. So all the peculiar add-ons, the other idiosyncratic changes, the failed field trials, and screw-ups like the ones mentioned here are just reflections of a get-it-done mind set without the kind of dedication it takes to produce a really useful document.

I don’t think the people that wrote it like it any more than the rest of us…
    May 29, 2013 | 9:32 AM

    For those who believe that psychiatry brings something of value, treating the DSM-5 as if it brings absolutely nothing of value may not be fair. Don’t you think the carving out of social communication disorder might have been a good idea? This seems to be a substantive improvement. I worry that the willful deafness of the APA is leading to such polarization that what might have been improved is harder to recognize.

    May 29, 2013 | 1:20 PM

    What good psychiatry does doesn’t give it a pass for harm, and once these diagnosis go mainstream the categories will be yet more abstracted and used by other professionals to create more “epidemics” like restless leg syndrome and child bipolar. Journalists, for instance, write sensationalist articles. Pharmaceutical companies publish checklists for laypeople to diagnose themselves or others. Teachers refer children to mental health services to be screened.

    In schools, boys born in December were 30 percent more likely to be diagnosed with ADHD and 41 percent more likely to have a medication prescribed than boys born in January. The risk is even higher for girls born at the end of the year— they were 70 percent more likely to receive a diagnosis and 77 percent more likely to get prescribed an ADHD drug.

    This is so prevalent that it has a name— “the relative age effect.”

    The misuse and misunderstanding of developmental milestones in pediatrics, and the mainstreaming of it, has contributed to a general sense among many parents and teachers that a large number normal children are “failing” to develop.

    There are a number of theoretical concerns about the use of 50th percentile developmental milestones in developmental surveillance. Knowing the mean age at which a child is expected to demonstrate a skill provides limited information to assess an individual child and limited information about child development in general: one reason is the considerable variability in the normal acquisition of developmental skills in early childhood. The 50th percentile is a point estimate that provides little guidance about what is “normal,” except for children whose skills are at the mean. As an example, based on data from the Denver-II, the 50th percentile for the skill of saying “dada/mama” nonspecifically is 6.5 months, and the 90th percentile is 9.1 months.
     The time interval between these two points (the mean and the “red flag”) is therefore 2.6 months. In contrast, the 50th percentile for the acquisition of two-word combinations is 19.8 months, and the 90th percentile is 25.2 months. The time interval between the mean and the “red flag” for this latter skill is 5.4 months, more than twice that for the former skill. This example illustrates that the 50th percentile alone is inadequate to estimate the outer limit of normal for the acquisition of a skill.

    May 29, 2013 | 1:33 PM

    Darn it! I ticked and hit the enter button. Grrr.

    Those last two paragraphs should be in italics/blockquote.

    And I was going to put this first:

    The news coverage of restless legs syndrome is disturbing. It exaggerated the prevalence of disease and the need for treatment, and failed to consider the problems of overdiagnosis. In essence, the media seemed to have been co-opted into the disease-mongering process. Although our review was limited to the coverage of a single disease promotion campaign, we think it is likely that our findings would apply to others. It is easy to understand why the media would be attracted to disease promotion stories and why they would be covered uncritically. The stories are full of drama: a huge but unrecognized public health crisis, compelling personal anecdotes, uncaring or ignorant doctors, and miracle cures.

    The problem lies in presenting just one side of the story. There may be no public health crisis, the compelling stories may not represent the typical experience of people with the condition, the doctors may be wise not to invoke a new diagnosis for vague symptoms that may have a more plausible explanation, the cures are far from miraculous, and healthy people may be getting hurt.

    We think the media could report medical news without reinforcing disease promotion efforts by approaching stories like “restless legs” with a greater degree of skepticism. After all, their job is to inform readers, not to make them sick.

    Psychiatry is no more immune to stupid disciples than any other field, a lot of the work of psychiatry is being carried out by people are very poorly educated about the processes by which conclusions are drawn in the field, and most journalists have zero training in the kind of rigor analysis for which we keep coming back to this website to read. Parents, teachers, and other professionals are essentially being given “impressions” that are being used to label children who are developing normally. Too many people are using these diagnostic categories as a lens with
    to evaluate others, with the mistaken view that they’re using a scientifically valid approach to determining what other people’s “problems” are.

    If the DSM were limited to psychiatrists, then who would believe that one out of four people are “mentally ill”— that belief requires a whole lot of salesmanship and amateur intervention.

    May 29, 2013 | 3:23 PM

    I, for one think that the DSM-5 definition of autism is actually much clearer than the mess that was in DSM-IV.

    And for the criteria stating “as manifested by the following,” I think most people would interpret that to mean “ALL of the following,” though I can certainly see why Dr. Frances would object to the wording not being more clear. I don’t think this has as much to do with DSM-5 being rushed as it has to do with the lack of a designer who is in charge of the overall user experience. DSM-5 seems to reflect more of a design by committee approach with weaker central leadership than DSM-IV in this regard. Perhaps Dr. Frances just cares much more about the precise wording of things than Dr. Kupfer.

    Allowing those who were previously diagnosed with Asperger or PDD-NOS to keep their diagnoses is the kind of practical move that I thought Dr. Frances would not mind so much. But I guess he really can’t come up with anything positive to say about DSM-5.

    May 29, 2013 | 4:20 PM

    Let’s print this manual so we can find out what’s in it.

    Gee, that sounds familar, gotta love politicians and insulated physicians who haven’t interviewed a real patient in years setting precedence and laws for providers and society to navigate…

    umm, is that an iceberg up ahead? Did’t I hear both the Democrats and APA say their work is titanic in impact?…

    May 29, 2013 | 4:34 PM
    May 29, 2013 | 5:27 PM

    Let’s assume Dr. Allen Frances is able to persuade his peers (and the rest of us) to accept his views on the proper diagnosis of autism…

    What’s next?

    What can the profession do to help a child diagnosed with such a disorder?

    Having spent some time in public schhols, working alongside good teachers, and therapists, there are some tools out there that work well.

    But there aren’t any psychiatric drugs that help.
    The drugs only make things worse.

    Which brings this all back to square one.


    May 29, 2013 | 5:31 PM

    And again.
    And again.

    Many of us are convinced there are ‘many’ better options than drugs.
    We’re dismissed as ‘anti-psychiatry’.

    But we’re not going away until these safer and more effective options become mainstream – especially with children.


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