Asperger’s and the DSM-V

The DSM-IV

DwH writes

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

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!

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

    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!

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*.

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.

 

 

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4 Responses to Asperger’s and the DSM-V

  1. orcmid says:

    That’s a touching story. I wasn’t thinking so much of your self-diagnosis as others doing it. It wasn’t clear to me that you hadn’t done so.

    Oddly enough, I once worried about not recognizing people, especially a spouse. It hasn’t happened, but it was a worry when I was younger. I’m not going to self-diagnose on that one, although I suspect it is connected with not visualizing visually for the most part.

    Your descriptions suggest to me that your experiences are outside the envelope of anything that I can comprehend. I can’t make parallels and certainly not equivalences. In see your accounts as a great service as well as valuable in your own journey.

  2. orcmid says:

    My son has gone through a range of clinical diagnoses but mostly on the schizophrenia scale, not the autism one (although the “personality disorder” and low affect might fit, I don’t know). At 48, most of his symptoms are controlled by medication and it is a balancing act for him. And of course the heavy-duty meds contribute in their own ways. The most noticeable aspect of his life, which continues to blossom, is the impact that having a supportive companion has made in his experience of dealing with situations where there is interpersonal conflict and the stress of dealing with others. I marvel at his progress.

    I tend to be irate (and occasionally outraged enough to take action) when folks apply Psychology Today pop diagnoses of themselves but especially others. I don’t find post-mortem attributions about Richard Nixon (or Hamlet) all that helpful in appreciating tragic characters. I find it especially repugnant when folks decide to label someone like Bill Gates as some sort of Aspbergers poster child.

    So, having seen some of your work before discovering this one of your trio of blogs, I am a bit startled. I remain uncomfortable with the value of self-labeling though. I am concerned that it is too easy to see traits in ourselves that we line up with the reports of those for whom they are an affliction. Closer to home, I don’t think I have ever been anxious or fearful in ways that my son has endured and I don’t think there is any comparability. My addictive behaviors are trivial in contrast with someone who is seriously afflicted by addiction (another extreme challenge for my son, who is in recovery, with all the challenges that carries). It goes the other way, too, of course, I have at least experienced headaches, so I can sympathize with those who have migraines that are intolerable, but only slightly better than those who have never had a debilitating headache.

    What to say.

    I think I want to leave diagnosis to health professionals. That’s iffy enough when it comes to mental health.

    Just as there are successful malcontents, it appears, from what you say, that one can have a successful, satisfying life while possessing identifiable traits of Aspberger’s syndrome. I gathered that the identification answered questions for you about your experience and how others related to you. I also admire your stand for tolerance of those who don’t fit our own cookie-cutter of normality and especially repudiation of bullies and other ostracisms.

    My one reservation is with regard to pop-identifications and there objectification, whether it be over left-/right-braininess, Myers-Briggs, …, whatever.

    I’ll keep reading with interest.

    • T.Rob says:

      Hi Dennis, thanks for the thoughtful post. For what it’s worth, I’m also uncomfortable with self-diagnoses and I keep thinking I’ll go get it confirmed officially. On the other hand, John Robison advised that adults who don’t need services put themselves at risk with an official diagnosis. It doesn’t help you personally if you don’t need services, and it doesn’t help with funding (at least at the moment) of research, it just gives potential insurers, employers, or others something with which to discriminate against you.

      On the other hand, I’ve read the diagnostic criteria thoroughly, taken every online diagnostic test I can find and spoken informally with some trained pros. This isn’t a case of borderline, could go one way or the other, fuzzy boundary kind of thing. It’s pretty unambiguous. In fact, I’m so blind to body language that as a teen I became convinced that everyone but me had telepathy. It was obvious that there was some kind of communication they all shared but that was inaccessible to me and the only thing that made sense was that they were telepathic and I was not. There was an incident when my wife and I had been dating for a few months and she got a haircut. I was working the register at the camera store when she walked in to show me her new ‘do and I said “Hi, can I help you?” After a couple rounds of “it’s me” and “I’m sorry, who?” she started to cry, at which point I recognized her.

      There’s thousands of examples throughout my lifetime of things like this that suddenly make sense when viewed through the lens of an Asperger’s diagnosis. So I have no doubt whatsoever with the diagnosis itself. I do have some reservations with self-diagnosis though. I’ve been writing offline about my childhood in an effort to better understand some of the more significant events and relationships and I’ve found this more helpful than I’d expected. I’ve also been spurred to go back and fact-check some of the details and this has led to even more revelations. It’s been a great project, although at times painful. Since I’m reviewing all these events though an Aspie lens, it occurs to me that an improper diagnosis might actually interfere with the project. Because of this, I’m once more leaning back toward going for testing. If I do, you can bet I’ll blog about it.

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