Thursday, January 26, 2012

Much Ado About the DSM-5

There has been much discussion lately, both in the blog-sphere and in some on-line news feeds about the upcoming changes to the Diagnostic and Statistical Manual Revision 5 (DSM5).  This guide, produced by the American Psychological Association, is used to diagnose disorders that are primarily behavioural, or that have no known cause with specific diagnostic tests.  There is no known blood test for depression, for example - you have it if you exhibit certain behaviours in a specific way.

Autism is defined in the DSM5, and the definition is changing.  Currently, Autism Spectrum Disorder refers to any one of three conditions:  "classic" autism, PDD-NOS, and Asperger's Syndrome.  A good definition of autism and PDD-NOS is here and it gives good examples for the uninitiated.

With Asperger's Syndrome, cognitive and language development, as well as daily living skills, are unimpaired.  With Asperger's Syndrome, the primary deficit is language as it is used for social purposes.  This includes social spoken language and non-verbal cues.  Asperger's Syndrome also includes repetitive behaviours but these tend more toward intensive interests or routines with no function rather than stereotypies (it is more likely you will see a child obsessed with dinosaurs and needs to go home a certain way over hand flapping, for example).

This triad of disorders is well established and most autism services are based on these diagnoses.  The DSM5 purports to eliminate these three disorders and replace it with a single diagnosis:   Autism Spectrum Disorder.

This new label has many concerned because it may cause several people who presently have autism to fall off the spectrum into a new diagnostic category.  This isn't a bad thing in itself, except that once identified with a condition, it is difficult to let that go when nothing has changed except the DSM manual.  Further, and more importantly, legislation is notoriously slow in catching up with realities and services will be denied to people who previously would be eligible.

Concern has come in the media not surprisingly from people concerned with the higher functioning end of the spectrum (Asperger's and PDD-NOS).  These individuals may revert to Social Communication Disorder if they lack many repetitive behaviours, whereas before it would have been autism.

Concern has also come from the more silent side of the spectrum, people who have autistic disorder but also intellectual disability, which comprises a sizable portion of the people with full blown autism.  Because of the phrase that ASD "cannot be accounted for by general developmental delays", there is concern people with autistic disorder will revert to Intellectual Development Disorder.

The authors of the DSM-5 believe these changes will enhance the specificity of the diagnosis.  I don't disagree, but concern is primarily around (a) identification with a disorder and (b) services associated with a disorder.

One might think the easiest way to solve this problem is just to extend current autism services to those now qualifying for social communication disorder (SCD) or intellectual development disorder (IDD).  The problem with this, of course, is that by re-classifying autism and spreading existing ASD over these broader categories is that there will be many people with SCD and IDD who were never diagnosed with autism and legislators will be loath to increase costs by increasing services for now what is a much larger group of people.  SCD is a new diagnosis and appears to be designed to catch people who fall out of ASD so at least they have "some label".

This will put enormous pressure on clinicians to give an ASD diagnosis when SCD or IDD is warranted, especially when an ASD diagnosis was indicated on the DSM-IV.  In short, the muddy waters will be worse than before.

Personally I feel the better approach would have been to combine autistic disorder with PDD-NOS as "Autism" and leave Asperger's Syndrome alone, combining the two under "Autism Spectrum Disorder".  It is grossly unfair to millions of people who presently have autism to be re-classified as IDD alone.  Similarly, I sympathesize with people who have supports with Asperger's Syndrome but now do not with SCD.

I think A will remain diagnostically ASD, but now that language impairment is removed from the autism criteria as well, she would have co-morbid Language Impairment as defined by the DSM-5.

Watch for a little chaos in 2013.  

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