Autism Criteria Critics Blasted by DSM-5 Leader

10 May

Remember how some comments in a scientific talk about the DSM 5 in Iceland was picked up by the New York Times, leading to a media and advocate firestorm of activity? The Times article was New Definition of Autism Will Exclude Many, Study Suggests.

Medpagetoday.com has another chapter in this story: Autism Criteria Critics Blasted by DSM-5 Leader. The term “blasted” doesn’t strike this reader as helping to bring some order to the discussion. The new article reports on a talk by Sue Swedo, who is a member of the DSM 5 committee. The New York Times article was focused on a talk by Fred Volkmar, who was a member of the DSM 5 committee but has since left.

PHILADELPHIA — The head of the American Psychiatric Association committee rewriting the diagnostic criteria for autism spectrum disorders took on the panel’s critics here, accusing them of bad science.

Susan Swedo, MD, of the National Institute of Mental Health, said a review released earlier this year by Yale University researchers was seriously flawed. That review triggered a wave of headlines indicating that large numbers of autism spectrum patients could lose their diagnoses and hence access to services.

Prof. Volkmar’s group analyzed data from 1993, when the DSM-IV was in development, and presents results claiming that a large fraction of autistics would not be identified under the DSM 5. Sue Swedo is quoted as responding in her talk:

Swedo said the Yale group misused the 1993 field trial data because it was inappropriate to take clinical evaluations structured a certain way to evaluate the DSM-IV criteria against DSM-III, and use them to determine how the DSM-5 criteria would perform.

“It was not just comparing apples and oranges, it was comparing apples with Apple computers,” she argued. “We [in DSM-5] were using words that hadn’t really been used in DSM-IV.”

In my opinion the main goal of the DSM 5 should be accuracy. Sue Swedo says that the field trials indicate that it is accurate, and suggests that the prevalence will not be dramatically changed with these criteria:

She pointed to the new field trial data from DSM-5 as justifying the work group’s decisions. The criteria showed excellent reliability — that is, different clinicians evaluating the same child usually came to the same diagnoses, with intraclass kappa values of 0.66 and 0.72 at the two academic centers where the criteria were tested.

Moreover, when the clinicians applied DSM-IV and DSM-5 criteria to the nearly 300 children included in the trial, the autism spectrum prevalence was not changed much.

I’m sure this isn’t the end of the discussion. One can hope that the discussion can be more data and fact driven than it has been in the recent past.

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17 Responses to “Autism Criteria Critics Blasted by DSM-5 Leader”

  1. Emily Willingham May 11, 2012 at 20:05 #

    I left a comment on that “blasts” article, using their rather awkward registration and comment interface, reproduced below.
    ——————–
    The article said, “Swedo said they sought to create criteria sensitive to include all patients with autism spectrum symptoms, but specific enough to separate those with a genuine disorder — that is, with clear impairments — from those such as self-described ‘Aspies’ whose functional abilities appear normal.”

    I don’t see how she reconciles this statement with her observation that previous and current diagnostic criteria left out adults completely or with the fact that current adults grew up in the absence of such criteria. I’m assuming, based on my experiences in the autism community, that people who are self-diagnosing are largely well out of childhood. They are primarily adults who’ve spent their whole lives working to “appear normal” because when they were children and showing “clear impairments,” no one knew what those signs meant, and the outcome was often, bullying, physical and emotional abuse, and social isolation. “Appearing normal” is a total survival mechanism. I sometimes literally shudder when I think about how life would have been for my 11-year-old son if we didn’t have the awareness we do now of what his behaviors really indicate and how much pain he would have suffered as a result.

    What Swedo’s doing here is dismissing any adult who feels that what they’ve read and learned about Asperger’s–either from their own children also being diagnosed or various online outlets–resonates for them and their experiences from early childhood onward. They had the same behaviors, functional difficulties, and social and motor issues, etc., as they see in their children or read about, yet there was no awareness during their own childhoods of what that might have meant. Dismissing them because they “appear normal” shows very little awareness on Swedo’s part about this population, what their lifetime experiences have been, or the extremely hard work they do now to “appear normal.”

    I’m also not sure why Swedo waited so long to “blast” people about the information being disseminated. I find that odd. Why not do so when the information was making the rounds in the first place?.

    • Sullivan May 11, 2012 at 21:50 #

      Emily Willingham,

      I’m having a hard time with this story. The “blast” comment makes me think there is a fair bit of spin from the reporter.

      That said, this does bring up the entire question with the DSM 5 about the idea of a level of disability being needed in order to obtain the diagnosis. That seems to be (a) a point where interpretations could vary significantly and (b) perhaps not beneficial to gathering as much data as possible.

      Does a person have abilities which “appear normal” if s/he can go out into the workplace for the day and accomplish what is asked, but that same person comes home and is a total wreck after compensating all day?

  2. stanley seigler May 11, 2012 at 21:08 #

    Psychiatrists say diagnosis manual needs overhaul
    http://www.reuters.com/article/2012/05/10/us-psychiatry-dsm-idUSBRE8490WQ20120510

    [CLIP]
    Peter Jones, a professor of psychiatry at Cambridge University, said DSM 5 should be “underpinned by science” built on an understanding of the biology and functions of the brain and mind -something he said neuroscience was not yet able to do comprehensively enough…”On this basis DSM 5 is, at best, premature and a waste of time,” he said.

  3. Emily Willingham May 11, 2012 at 22:35 #

    The “blast” thing is overkill, although the quotes from Swedo do come off as blasty. I’m having a hard time with this story for a number of reasons and am dying to do a dev edit on it.

    At any rate, your questions are, of course, to the core of the issue. One reason I wish we could scrap the DSM altogether and pull together a basic primer on identifying *gaps* and *needs* to home in on, rather than working from the perspective of an encompassing label and trying to shoehorn diagnosis and treatment into that predetermined framework. Yes, a pipe dream, I’m sure.

    My question goes even further: If the person “appears normal” (whatever that means), does it matter *at all* how much that person is focused, in the moment, on appearing that way? Surely, the quality-of-life aspect of having to work *that hard* at appearing that way applies in the context of whether or not something is disordering or disabling. Indeed, a basic consideration for whether or not something is a disorder is how it affects quality of life and activities of daily living, not whether or not it “appears normal.”

    • Sullivan May 11, 2012 at 22:49 #

      ” Indeed, a basic consideration for whether or not something is a disorder is how it affects quality of life and activities of daily living, not whether or not it “appears normal.””

      How about long term? If a person is under extreme stress every day and as a result his/her life is shortened, did that person suffer a disability? I’d say so. Under the “appears normal under daily living” criteria, the person would not be classified as disabled.

  4. Emily Willingham May 12, 2012 at 01:24 #

    I’m just speaking to the way these things are categorized now, and in the clinical sense, acute effects on activities of daily living and quality of life are considered clinically relevant. Of course I’m not excluding long-term outcomes; I’m just trying to place things in the current context to ask why they wouldn’t be considered a disorder or disability even under existing frameworks. I’m not talking about “appears normal under daily living” at all; I’m talking about how struggling to appear “normal” negatively *affects* daily living and quality of life. In that sense, this struggle should already qualify as disordering/disabling under existing frameworks, never mind some nirvana where people even consider long-term sequelae.

  5. Sullivan May 12, 2012 at 01:29 #

    I think we are on the same page. Per above:

    Does a person have abilities which “appear normal” if s/he can go out into the workplace for the day and accomplish what is asked, but that same person comes home and is a total wreck after compensating all day?

    Only an example. But, yes, “appears normal in daily living” is a strange criterion.

  6. Roger Kulp May 14, 2012 at 14:11 #

    Emily@20:05:48

    I do wonder if Dr.Swedo isn’t talking about the self-diagnosed types,who populate a number of internet forums I could name.

    “It was not just comparing apples and oranges, it was comparing apples with Apple computers,” she argued. “We [in DSM-5] were using words that hadn’t really been used in DSM-IV.”

    If anything, she suggested, the DSM-5 criteria are more sensitive, not less, for picking up the key features of autism spectrum disorder — particularly “the integration of gestures and verbal communication.”

    This was they very impression I got from reading the proposed DSM-V description itself,not what some other person,who may have a biased opinion,says about it.

  7. Anne May 18, 2012 at 08:21 #

    @Emily Willingham, I can’t agree more with your intelligent, insightful, and well-written comments.

  8. Sullivan May 18, 2012 at 18:09 #

    Emily,

    sorry for the way I worded my last response. “We are on the same page” sometimes comes across as “I think you agree with me”. I agree with you.

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