Wednesday, January 22, 2014

Aspies still have a home, an identity

   Does the DSM-5 create problems or a loss of identity for people previously diagnosed with Asperger's Disorder?

   Short answer:  the diagnosis is now officially part of a larger spectrum, but the Aspie identity will continue to exist and be important.

   The DSM-5 description of Autism Spectrum Disorder/ASD specifically mentions that people with Asperger's Disorder will almost certainly meet the criteria for ASD.  But the label is not on the list of diagnoses!  But neither is "Autistic Disorder."

Lorna Wing, author of "Asperger Syndrome"
   Lorna Wing coined the term "Asperger Syndrome" in 1981 in a book by that title.  She was referring to the kids studied by Hans Asperger, who referred to them as having "autistic psychopathy." She felt that his population differed from the kids studied by Kanner who was studying autism at the same time ask Asperger.
   As Dr. Wing said in a 2009 interview with the editor of Autism Spectrum Quarterly about her research leading up to the book "Asperger's Syndrome", "We found no neat boundaries between different subgroups.  This led to the idea of an autism spectrum, much wider than Kanner's group."

In other words:  The very person who created the label "Asperger's Syndrome" was not opposed to the idea of a broad population covered by a diagnosis of "Autism Spectrum Disorder."  In fact, that's what she had in mind and what her research supported.  A "syndrome" is a collection of symptoms that tend to go together; a "disorder" is a a syndrome that involves high levels of distress or problems in functioning in daily life.

   People who have identified themselves as "Aspies" can preserve that identity, even say they have "Asperger's" (Syndrome), even if they are functioning just fine in daily life without supports.  The diagnosis of "Autism Spectrum Disorder"/ASD is now for people of different levels of intelligence, language ability, and different patterns of symptoms who still share some brain-based tendencies related to social communication, sensory issues, repetitive behaviors that don't make sense to neurotypicals, and brain integration/coordination.
     I will comment more on this definition of the shared "core" symptoms of ASD in another post.  And I have already written about the spectrum concept.   For today's post, on the Aspie identity issue I hope it's clear:  Aspies are now officially part of a larger community of people on the autism spectrum, but can also keep their Aspy/Aspie identity and community.  With my clients and friends I am using both terms for some clients, especially during this period when the Autism Spectrum concept is new, although in a way, especially for the person who helped the world recognize the existence of people with Asperger's, the spectrum has been there all along.

1 comment:

  1. Disorders are context driven, decided outside the condition, whereas syndromes are close to self profiling, decided within the condition. I am all for the latter.


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