The redefinition of autism in DSM5 has already caused a great deal of controversy. In fact, I’d venture to say it’s helped make this latest DSM revision the most contentious and disputed ever. Now that it’s done, the altered definition raised a concern I have not yet seen discussed – the relationship between autism as defined in America (DSM) and autism as its defined for the world at large (ICD).
Many Americans are not even aware this difference exists. I’ll explain . . .
The DSM is produced by the American Psychiatric Association. It provides a definition of autism in its various forms, as used by mental health workers, psychiatrists, and others in the United States and elsewhere.
However, when disease and disorder are reported for statistical and record keeping purposes, codes from the WHO's ICD manual are used. And those ICD codes are backed by their own definitions. The ICD is a much broader compendium that the DSM, in that it covers psychiatric issues, diseases, injuries, and many other conditions and afflictions. The current version of ICD is 10; the United States and some other countries are still using ICD 9 for reporting purposes.
The ICD definitions are important because they provide the framework for discussing medical and mental health issues around the world. ICD is the standard that that ties everything together, so that a person with autism, flu, depression, or any other issue would be diagnosed the same anywhere he or she went.
That may not always happen, but it’s the goal of ICD’s creators.
In the past there was usually a good correlation between DSM IV definitions and ICD. However, DSM5 has added a new condition - Social Communication Disorder - that does not appear in ICD at all.
Social Communication Disorder is described (in my opinion) as a sort of “autism lite,” where the person has some features of autism but not enough to meet the diagnostic standard under the new definition.
That means - for reporting purposes - a person who is diagnosed with SCD will have no codable disorder, according to the current ICD. Furthermore, since ICD is the standard set of definitions for the world, a person diagnosed in America with SCD has a disorder that's not recognized in England, Germany, Japan, etc.
Interestingly - when DSM5 autism committee chair Sue Swedo did her DSM5 presentation to the IACC, and she said the new criteria captured a population essentially the same size as the DSM IV definition did . . . but she was including SCD in her totals. Yet the APA did not define SCD as an autism spectrum disorder. You might say they left that a bit ambiguous, though it seems SCD is not an Autism Spectrum Disorder as presently defined. So what is it?
In the United States we talk about autism, and now an autism spectrum. To that end, the APA decided to fold Asperger’s and PDD-NOS under that umbrella. The ICD committee had already done that, using a slightly different approach:
Pervasive developmental disorders F84
F84 Pervasive developmental disorders
F84.0 Autistic disorder
F84.2 Rett's syndrome
F84.3 Other childhood disintegrative disorder
F84.5 Asperger's syndrome
F84.8 Other pervasive developmental disorders
F84.9 Pervasive developmental disorder, unspecified
The ICD and DSM guides have always defined disorder from slightly different perspectives but the result was usually reasonably consistent. This new SCD definition represents a break from that; one the ICD committee will have to consider when updating their own definition of pervasive developmental disorders and autism for the next revision.
Perhaps SCD should become another subcategory, F84.6, for example. Reading the APA definition it does not sound to me as if it should stand alone, but that’s just my opinion.
Here in America, it’s time to open a discussion about Social Communication Disorder and where it belongs. If it’s part of the autism spectrum or “autism lite” we need to make a decision about what services will support people with the new diagnosis. Otherwise we risk doing that population a great disservice – giving them a diagnosis that leaves them nowhere, with no indicated services or therapy.
I’ll be interested in your thoughts
John Elder Robison
And don’t forget – my newest book – RAISING CUBBY – is coming, March 12, 2013!!