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From John Carley of GRASP: A Patient Advocacy Group's View on DSM Changes

Posted Feb 02 2012 10:58am

Interesting arguments are being made on both sides of the divide on whether to tighten up DSM criteria for Autism Specturm Disorders.  Here's a message sent out by John Carley from GRASP which advocates for individuals with Asperger's:

1. Spectrum conditions are over-diagnosed.
Speculating that the DSM-IV's broadening of the criteria caused an over-diagnosis problem is purely that: speculative, as it's realistically unprovable. Equally speculative perhaps is GRASP's statement from our petition stating that these conditions are under-diagnosed (as examples we use the truths of how our understanding of spectrum conditions in women is still in its infancy, as well citing the many economically-challenged communities that have yet to receive proper evaluation).  
 
The complaint of over-diagnosis is one that we've all heard for quite some time now, usually from overwhelmed school boards, or from those who resent having to respect those whom they would prefer to think of as inferior (how's that for speculative?) like they once were able to back in the good old days. These are usually embittered outbursts coming from those who are tremendously by the complexity of the autism spectrum.
 
The resentment factor was well illustrated in  Paul Steinberg's Op-Ed in yesterday's New York Times . He began his appeal to reduce the criteria by stating "Asperger Syndrome and Aspies — the affectionate name that people diagnosed with Asperger Syndrome call themselves — seem to be everywhere" (the last paragraph in the Op-Ed is equally embittered). Steinberg belongs in that classification of clinical pros who don't want to admit, or can't see, how dumb we were—as recently as 1993—about all this stuff, and that the present resentment factor was an inevitability of Social Darwinism as we trudge through the admittedly painful process of catching up (he is, however, the exception to this stereotype as such views are usually the product of very experienced clinicians who preferred the days when they didn't have to be careful about the terminology, or had fewer cases. Steinberg is relatively young). Steinberg goes on to suggest his grand plan: a second classification of condition called "Social Disabilities," a proposal he should know the DSM-5 Committee is not considering, and that therefore no services will apply. His piece is not demonic, butSteinberg thus throws those in need of services or specialized education for social deficits back to the 1980s.
2. The old criteria wasn't scientific enough
 
Being more specific is of course, quite possible. But not only is exactitude an impossibility given the fact that spectrum diagnoses are given without a blood test or an MRI, but people do improve, and thus their symptomology changes. But what really makes no sense about this stance is that the planned assimilation of all spectrum diagnoses (Asperger's, autism, and PDD-NOS) is based on the reality that finding a border in between each one was pointless—an idea of deep iconic meaning (though still iconic) that our world was pretty split on 50-50—half liked lumping the diagnoses into one word, the other half wanted the separation, no matter how flawed it was in practice.
 
That umbrella act that was reported to be part of the changes to the DSM-5 almost two years ago is in effect giving in to (somewhat wise) idea that you can't try and get too scientific. So arguing for all spectrum conditions to be called "Autism Spectrum Disorder" and yet saying that things aren't scientific enough seems a direct contradiction.
 
3. The costs for appropriate services are too great a burden on the greater collective.
 
(Taking from GRASP's petition) The DSM-IV did not (as has been stated) financially drain clinical or government resources; on the contrary, the DSM-IV, in a big picture sense, actually saved money given the long-term cost of (a) children who if not educated properly would cost more in services later on, and who because of their appropriate education could be productive citizens as adults, and (b) individuals who by knowing who they were had their capacity for anxiety, depression, or anger lessened—thus decreasing incarceration rates, homeless rates, and reducing people's dependence on others to lead productive lives.
 
Additionally, there is a large portion of those on the spectrum who are not in need of any services or medication whatsoever. For them the diagnosis is usually a must for their self-esteem lest they go back to the days when their behavioral differences were interpreted as character deficits, not wiring. This portion of the spectrum costs us nothing.
 
But whether GRASP's stance is true or untrue, that the DSM Committee would allow costs to enter into their decision-making,  as Committee member Dr. Paul J. Kupfer stated to the New York Times , is wholly inappropriate. Theirs is the task solely regarding our mental and emotional well being, a point we'll come back to at the end.
 
4. The two known studies that GRASP and many others have been citing (including the NYTimes story that broke this story)—one by Yale's Volkmar and one by Matson/Worley—are deeply flawed studies.
 
Volkmar's study claims that roughly 40% of people currently holding a spectrum diagnosis could lose the label under the DSM-5.Matson/Worley's study claims roughly 32.3%. First off, that the two main studies corroborating one another are under attack is a tad strange. But autism organizational representatives from Autism Speaks ( Peter Bell on Channel 5 New York ) and the Autistic Self-Advocacy Network ( Melody Latimer on GRASP's Facebook page ) have stated that the Volkmar study has serious flaws. They're not the only ones.  DSM-5 Committee member, Dr. Catherine Lord critiques the study in the original New York Times article , and Volkmar himself states that the numbers may be slightly exaggerated.
 
Two points of contention:
1. Remember too, that Volkmar resigned from the DSM-5 Committee. Personality conflicts are not out of the question.
 
2. LSU's Worley and Matson are fairly well known, and Yale's Volkmar is very well known. These aren't studies by Andrew Wakefield. To assume no validity to their efforts is a little hard on the imagination.
 
3. Lastly, (and this is how GRASP has operated) let's say that both studies ARE deeply flawed. Let's say that their studies are only 50% accurate, which would render them pretty unreliable. Under that scenario (of 50% accuracy), 16%-20% of those who have a current diagnosis would lose theirs under the DSM-5. So...rough numbers here...if the prevalence numbers are 1 in 100, then in a nation of 300 million that's 3 million on the spectrum. 16%-20% of 3 million people equals 480,000-600,000 people who would lose their diagnosis if those studies are indeed "severely flawed." That's reason enough for everyone to be very concerned.
 
5. "I'm pretty sure the DSM-5 changes won't effect me."
 
In another New York Times Op-Ed from yesterday, Asperger author and professor Benjamin Nugent advocates narrowing the diagnosis significantly . After describing himself as fitting the current criteria to a T, he then discusses coming to New York and finding like-minded people that helped him gain confidence and eventually, have himself a satisfying life. Another non-clinician, he concludes his willingness to be diagnosis-less with "Under the rules in place today, any nerd, any withdrawn, bookish kid can have Asperger Syndrome. The definition should be narrowed. I don't want a kid with mild autism to go untreated. But I don't want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn't true."
 
Well, despite the resentment factor that every . . . lonely teenager always gets a diagnosis of Asperger's, it simply isn't true. There are clinicians who don't bestow diagnosis on people because they're weird, as hard as that is for the embittered to believe. But that myth is shared by many more than just Mr. Nugent.
 
Like Mr. Nugent, I too do not need services or medications for my Asperger's (though regarding pharmaceuticals, I'd bet a lot of grade school teachers would have preferred that I took them).
 
But unlike Mr. Nugent, I'd be ashamed of myself if I thought that my success allowed me to neglect those less fortunate. 
 
Lastly, you may be wrong to think you'd be exempt from the changes. As both the Volkmar and the Worley/Matson studies claim, it won't just be the Albert Einstein end of the spectrum that loses their diagnosis. These changes effect the whole spectrum.
 
6. "Let's just trust the Committee to get it right. They have many months to go before revisions are finalized, and they're the best at what they do."
 
The DSM Committee members speaking to the media thus far are Kupfer, Lord, and Dr. Bryan H. King.  King says no one will lose their diagnosis  (seems odd if they're changing the criteria), Kupfer says "We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder . . . It becomes a cost issue." and Lord in several media appearances is attempting to reassure people while not denying that some will be left out. Let's also not forget Volkmar's resignation.
 
In short, they're not communicating well with each other, and they're certainly not communicating well with us. And given the disparity of statements, at least one of them is being very dishonest (Kupfer, oddly enough, seems the most straightforward with us). They are the creators of a book that will define what emotional and mental health looks like for the next dozen years or so, and yet they behave as dysfunctionally as possible. You can't make this stuff up.
 
Is there a chance that we have nothing to worry about? Yes.
 
Should we run that risk? Given that the more noise made against these possible changes furthers our chances of reversing them, should we instead stay silent and trust this Committee? Based on the Committee's behavior thus far, doing so is bad parenting, bad advocacy, professionally irresponsible, or just plain not smart. They had our trust because of all the social good that the DSM-IV gave us. Then, they lost that trust not simply because of changes that we disagreed with. They truly sealed the deal of distrust with disingenuous damage control that also exposed their internal dysfunction.
 

 

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