A Different Type of Diagnosis

I recently attended a meeting where a Special Education director asked me, as someone with a diagnosis of Asperger's Syndrome, whether I was upset that the diagnosis was "disappearing" with the release of the DSM-5.  I had to think about it before answering - I hadn't really given it much thought.  Since my diagnosis three years ago (at 37), I have always viewed myself as an Aspie, or having a diagnosis of Asperger's Syndrome.  However, that, to me, is only a label that has been placed on me by the observation of my behaviors or, more importantly, how my behaviors have exhibited themselves at different stages of my life.  No matter what label is placed on me because of those behaviors, I am different from those around me.  Any changes that the APA makes to the DSM cannot make me change that view of myself, whether I am Asperger's or Autistic or Socially Inept.  It will not change who I am or how I deal with my differences.

So, to get back to my story, I told her that, despite not being a major category of diagnosis, it will still be a subtype diagnosis, it's just that it will be under a different major title, that of Autism Spectrum Disabilities.  This, however, is not completely how I feel about it.  Let me elaborate...

The DSM has been the standard tool for diagnosing psychological differences for decades.  Compiled and published by the American Psychological Association (APA), this manual provides the codes which all types of organizations, from educational institutions to insurance companies, use for billing and organizing people into categories in which they fit best.  Providers of services have also used the DSM diagnoses to determine the most appropriate treatment for different disorders, be it psychological or pharmaceutical, or some combination of the two.  For example, under the DSM-IV-R, I was diagnosed with Asperger's Syndrome.  However, the diagnosis criteria is all behavioral in nature.  For example, when I received my diagnosis, I met the following criteria:

• DSM-IV DIAGNOSTIC CRITERIA FOR ASPERGER'S DISORDER
  (criteria I met are in italics)
  A.Qualitative impairment in social interaction, as manifested by at least two of the following:
  
  (1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
  (2) failure to develop peer relationships appropriate to developmental level
  (3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
  (4) lack of social or emotional reciprocity
  
  B.Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
  
  (1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
  (2) apparently inflexible adherence to specific, nonfunctional routines or rituals
  (3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
  (4) persistent preoccupation with parts of objects
  
  C.The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
  
  D.There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
  
  E.There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
  
  F.Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

However, these criteria are all based on how I was behaving at the time.  When I was undergoing my diagnosis, I was having difficulty at work, and the stress was exacerbating the presentation of these symptoms.  Two years later, I was in a job where I was appreciated and my stress levels were extremely low.  That means that, had I not sought therapy when I did, my behaviors would never have warranted a diagnosis of Asperger's.  Does that mean that in the past two year my Asperger's has gone away?  No, it's just under the surface.  It's still a part of who I am, but I just blend in with others much better now since I am under much less stress than I was three years ago.

And that, my friends, is why I am upset with the APA's decision to reclassify Asperger's  Syndrome, along with a ton of other psychological disorders in the DSM-5.  Asperger's Syndrome might share similarities with Autistic Disorder and other Pervasive Developmental Disorders, especially in the behaviors that those with AS/Autistic Disorder/PDD-NOS exhibit.  However, the treatment for these three disorders, along with most of the DSM-5 diagnoses cannot be entirely based on the behaviors that one exhibits.  That would be like treating someone who was limping with surgery to remove a bone chip form their knee (which may or may not exist).  Not all behaviors (limping, lack of social or emotional reciprocity) have the same cause.

So, then, how do we learn to treat people with psychological disorders?  Well, when the DSM-5 (which will be released and become effective on May 18), was announced and it's diagnosis criteria were released, the National Institute of Mental Health (NIMH) announced that the APA's insistence on basing diagnoses on behaviors rather than focusing on finding biological markers for these disorder was creating validity problems with the DSM.  They announced that they would be focusing their research efforts on their new RDoC:

The NIMH has launched the Research Domain Criteria (RDoC) project to transform diagnosis by incorporating genetics, imaging, cognitive science, and other levels of information to lay the foundation for a new classification system. 

The RDoC will hopefully replace the DSM in the future.  It will be a blessing for those who wish to have better mental health services for the population, but it may be a death knell for the pharmaceutical industry.  To have a diagnosis like ADHD have a biological marker that might have a simple medicinal treatment, all these meds that are now prescribed might be found to be useless.  However, for those of us who have been diagnosed with Asperger's, we will probably find that all the medications people have been prescribed for conditions similar to ADD, ADHD, and other co-morbid conditions have a negative effect on us.

I might be wrong.  The DSM-5 might be a good thing, but the way it diagnoses through behaviors is not the way medicine should work.  We need to create a biological way to diagnose psycholgical disorders, like the NIMH's RDoC.