How do you feel about this?

According to yesterday’s New York Times,* Aspergers syndrome is proposed to be struck from the next edition of the DSM, due out in 2012, in favor of the term “autism spectrum disorder.” I suggest that the DSM editorial board hit the delete button and do the same thing for schizophrenia, in favor of a more nuanced perspective, as appears to be the case with the jettisoning of the Aspergers’ label. The DSM proposed change recognizes that there are different levels of functioning within autism, and that there are often other accompanying health problems that need to be treated.

This is a step forward, at least. Why not extend the same courtesy to schizophrenia, which seems to be on the bipolar, depression, mania, OCD spectrum? Although I am most definitely not in favor of saddling anyone with a psychiatric diagnosis, taking on the likes of the American Psychiatric Association, publisher of the DSM, will have to be chipped away at over time. What exactly is the difference between Aspergers, which can be terribly taxing on the individual and the family, especially when the child is young, and schizophrenia, which often allows a trouble free childhood and academic success, often brilliance, but provokes a major crisis in the adolescent years and early twenties? Well, for one, Aspergers is a recent addition to the DSM (1994) and it is easy to give up something you haven’t become entrenched in. (I had actually never even heard of it until my son was diagnosed with schizophrenia.) Schizophrenia, in contrast, functions as both the the holy grail and cash cow of the mental health industry. Wait, no, I take that back about the holy grail part. The APA and pharmacology aren’t interested in curing schizophrenia. It’s too much of a cash cow. They just pretend they are interested.

“Asperger’s means a lot of different things to different people,” Dr. Catherine Lord is quoted as saying. “It’s confusing and not terribly useful.” (I say the same goes for schizophrenia.)

The New York Times article quotes the efforts of the Aspergers’ lobby to widen the understanding of Aspergers to include health issues that accompany this diagnosis. The autism lobby has done an excellent job of bringing the message to the psychiatric community that there are underlying health issues that can be addressed, very often successfully. Many people say exactly the same thing about schizophrenia. I won’t quibble about deleting one more meaningless diagnosis in the DSM, but while they are at it, they should treat schizophrenia in the same way.

Unfortunately, the diagnosis of schizophrenia is too big a diagnosis for the APA to relinquish. That they will hit the delete button for schizophrenia is unlikely, given that the latest APA news to be posted on its site is “Brain MRI May Pinpoint High Psychosis Risk.” Nonetheless, let’s keep in mind that the gay rights lobby forced it to delete homosexuality from the DSM in the early 1970s. It can be done.

It can be done, were it not for the fact that the public seems to have bought the APA’s and NAMI’s negative view of schizophrenia. There is no powerful lobby for schizophrenia taking the same position that the autism lobby has succeeded in doing. This means that the battle to normalize schizophrenia on the spectrum of human conditions and delete it from the 2012 DSM is lost before it has begun due to a lack of organized opposition to the prevailing viewpoint.

“All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public.”

Mark your calendar for January 2010 and let them know that Aspergers isn’t the only meaningless label. Here’s the APA’s website address.


2 thoughts on “How do you feel about this?”

  1. Thank you for your words about the autism lobby.

    I am only just old enough to remember when autism was considered sometimes childhood schizophrenia (if not from life, then from books).

    They did not change it until between 1980 and 1987.

    What has been the diagnosis which has been in the Diagnostic and Statistical Manual since ever? (Well, 1952). That’s right, schizophrenia.

    In the first instance, they were called reactions.

    Impairment in social and occupational activity was at least 20-30% disability. That was the minimum.

    The ‘special syndrome reactions’ of 1952 are the ones we would now call Disorders First Evident in Infancy, Childhood or Adolescence.

    And it seems they always had Not Otherwise Specified (and probably always will, so long as symptoms puzzle and confound statistically)!

    Lots of people seem to be saying that Asperger syndrome is like one of the personality disorders, except some of the reactions which would be indicative of personality disorders were either inborn or part of negative life experiences.

    And Asperger himself called it ‘Autistic Personality’ or ‘Autistic Psychopathology’. Kanner called it ‘affective contact’ (disturbances thereof). Kanner mentioned many histories of families.

    And the DSM-IV is now 54 megabytes big!

    If there was one diagnosis I and my friends would change it would probably be Reactive Attachment Disorder. Some people have post-traumatic presentations, and others have personality disorder presentations. There is also a bit of psychosis in there as well. And there are often organic conditions in the parent, or in the child.

    The DSM generally gives a list of the people in the work group. So Schizophrenia and Psychotic Disorders, as well as Diagnosis and Assessment.

  2. Thanks for a good overview of what goes into the DSM. Yes, autism was once thought to be childhood schizophrenia, was definitely rarer than schizophrenia in the adult population, and yet has almost caught up to schizophrenia in terms of the numbers being diagnosed. Yet, the autism lobby has succeeded in pushing back the DSM while schizophrenia is hanging in there as a diagnosis that most people don’t want to have.

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