Asperger’s and the DSM-V

So what do you think of Aspergers’s Syndrome not being included in the DSM-V?  Do you think it somehow de-legitimizes Aspies?

At first I was dismayed by the change.  I had never heard of Asperger’s until fairly recently but when I did, it was one of those “ah-ha!” moments where all of a sudden, everything made sense.  I was saddened by the prospect of removing it as a formal diagnosis because I believed others would be denied the sense of clarity and relief that I had experienced.  The thought also crossed my mind to rush down to the local shrink and get my formal diagnosis before they stop minting them.  But on further reflection, I am now more or less in favor of the change and I’ll explain why if you’ll indulge me just a bit.

Digital samples do not represent the infinite variability of analog phenomena

There is a problem that is relatively new to the world, related to how we model analog phenomena using digital technology.  The example most people are familiar with is that of the CD versus a vinyl album.  Audiophiles tell us the analog version is much richer.  This is because an analog signal can represent an infinite number of values between silent and full volume whereas 16-bit audio can represent only 65,535 distinct values.  With analog, the signal rises and falls much like a ramp.  With digital, the signal jumps from point to point like stair steps.  Only by making the steps very fine, do we approach the sound we get with analog signals, and that is only because we eventually reach the limits of what human hearing can distinguish.  In reality, even with 32-bit audio, an analog signal can represent infinitely more points along a signal curve.

So what does this have to do with Asperger’s?  The diagnosis represents a cluster of related symptoms along what is called the “Autism Spectrum“.  The spectrum itself is analog and there are an infinite number of points at which individuals may be represented.  However, we don’t have 65,535 distinct diagnoses with which to describe them,  In fact, we have but a handful.  So either the diagnoses must overlap, or there are gaps between them which are undefined.  The overlap causes problems because our administration of the health care bureaucracy codifies everything into numerical diagnostic codes.  Once again, these are a set of discrete points to which everything must be assigned. Furthermore, a diagnosis is expected to stick.  It doesn’t do to vary back and forth across three or four diagnostic codes depending on the doctor you see or the patient’s cyclic variation expressing symptoms.

No diagnosis for you!

Leaving a gap is as bad as having an overlap.  Here are people who simply fall through the cracks.  It isn’t classic autism, not Aspergers, it’s more or less on the autism spectrum but we can’t quite put our finger on it.  No diagnosis for you.  Go home.  Next patient.  Or, if you are lucky, you get one of the diagnoses of exclusion.  Well, we’ve ruled everything else out, you must have  “pervasive developmental disorder not otherwise specified.”

Furthermore, the “autism spectrum” is merely a useful metaphor and not particularly precise.  The name evokes the image of a gradient along a single variable, much like the visible light spectrum is a gradient of electromagnetic frequencies.  In reality though, autism is multi-dimensional.  There are many spectra on which the autistic individual may be measured.  The official diagnostic criteria for Asperger’s list several:

• An analog spectrum
  is infinitely variable

  Social fluency

• Degree of pattern and repetition in activities
• Degree of pattern and repetition in interests
• Degree of pattern and repetition in behavior
• Age-appropriate language proficiency
• Age-appropriate cognition
• Competency in day-to-day tasks (U.S. diagnostic criteria)

To diagnose Asperger’s, the individual must cluster into certain ranges along the majority of these spectra.  Some people fall so squarely into the target ranges, along nearly all the spectra that there is no doubt about their diagnosis.  Others may barely qualify by meeting the minimal number of criteria or falling just within the eligible threshold along a given spectrum.  These are not as clear-cut and the individual may receive differing diagnoses depending on the doctor, and even over time as their proficiency changes.

So, how useful is a diagnosis where the measurements are fuzzy, the criteria are fuzzy, there is a high degree of variation among clinicians, and patients expression of symptoms naturally varies over time?  Is that a sound basis on which to divide up a rich mulch-dimensional spectrum into five discrete diagnoses that determine a person’s eligibility for different amounts of coverage and services in the health care system?

DwH also comments:

Also, see Are You On It? If so, you’re in good company. From Asperger’s to “Asperger’s,” how the spectrum became quite so all-inclusive. about people jumping on the bandwagon!

For those who haven’t read it, the article discusses how everyone seems to have Asperger’s these days.  It is the new fad diagnosis and the new self-diagnosis.  This is another reason I’m in favor of removing it from the DSM.  Not simply because it’s a fad, but because it serves a different purpose now.  Hear me out on this, it’ll make sense shortly.

Good thing the astronauts had a better map!

I think the Asperger’s diagnosis was useful as a rung on a ladder of our understanding.  When we knew much less about autism, brain plasticity, mirror neurons, functional imaging, Transcranial Magnetic Stimulation and the brain in general, the diagnosis gave us a target toward which we could focus attention, research, treatment and the anxiety of parents and patients searching for answers.  It was a high-level map, like looking at the moon and pointing out Mare Tranquillitatis (Sea of Tranquility).  But after landing, simply knowing they were in Mare Tranquillitatis wasn’t particularly useful for Aldrin, Collins, and Armstrong who needed a much more detailed map of local features.  Furthermore, once there, it isn’t whether you are inside or outside the Mare that is interesting, but rather the qualities of the regolith and local terrain.  These qualities are not specific to Mare Tranquillitatis and the knowledge and techniques to deal with them are useful anywhere on the moon.

Actually, you are *here*.

Now that we have a much finer-grained map of autism, is the Asperger’s diagnosis still useful?  We are no longer gazing at it from a distance and identifying major geography.  We are on the surface, rooting around in the regolith.  We have reached the level of understanding where a more detailed map allows us to deal not with Asperger’s as a totality, but rather specific aspects of it, across more spectra and across a wider range than originally identified.  In order to progress further, we now need to focus on specific aspects such as synaesthesia or theory of mind, which are not specific to one type of autism.

The DSM is the official reference by which we run our healthcare bureaucracy and I’ve come to believe that removing Asperger’s as a diagnosis will ultimately result in running that bureaucracy more efficiently.  However, as the article implies, it seems as though an informal diagnosis of Asperger’s is useful in its own right.  I sincerely doubt it will go away.  Doctors can say “Officially, you are on the autism spectrum.  Unofficially, you have what we used to call Asperger’s Syndrome.”  Similarly, individuals will continue to take the online assessments, or self-diagnose based on available literature.

Sure, there will be some who jump on the bandwagon and self-diagnose based on misconceptions or, as Nora Ephron suggested in the article, as an excuse for being a prick.  There may even one day be as many Aspies as Cherokees and that’s OK by me as well.  Although the wannabe phenomenon is offensive to American Indians (and rightly so, we ought to stop it), as an Aspie I’d much rather have that problem than the current one of people reacting to Sandy Hook and other shootings by calling for segregation of autists on the basis of some imagined danger we represent.  (Also something offensive to the American Indians and rightly so, we ought to stop it.)

So to sum up, I think that the change in the DSM will help as far as allocation of funding and healthcare management.  So long as the services formerly available to Aspies remain available under the new diagnosis (which remains to be seen) I don’t think it will impact individuals, since they can still use the term on an informal basis.