The “off-meds” hysteria

A cause worth promoting is to decouple the idea that people with a label of schizophrenia are, by definition, dangerous when off meds. Stephany of Soulful Selpulcher relates the story of how differently her daughter was treated by authorities when she somehow lost the label “schizophrenic.” In the first instance, her twenty-one year old daughter was slammed face down into the dirt by the police because word got out she was a schizophrenic “off meds.” An over-reaction worthy of the best horror films ensued. It’s the “off meds” part here that causes the violent reaction. OMG – they’re off meds! Nuke-em! When, on a different occasion, the same young woman was reported “mute and autistic,” she was treated with respect.

Remember the hunger strike that MindFreedom went on back in 2003 to try to force the American Psychiatric Association to produce actual scientific evidence backing the reason why only the medical theory of ‘chemical imbalances’ predominates when it comes to mental illnesses. (No evidence was produced.)

How about a bunch of people getting together to go down and picket the American Psychiatric Association, the offices of E. Fuller Torrey, the National Alliance for the Mentally Ill (NAMI), most government funded health organizations and other proponents of the idea that people off meds need to be back on them? Not just any bunch of people but a bunch of people who got the label SZ and are fully capable of functioning off their meds. They can hold up signs saying “I’m off meds. What are you going to do about it?” Or, “I’m off meds. What next?” or “Off meds doesn’t mean off my rocker.” How about “Off meds – Back off!”

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. http://www.psych.org/

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http://www.nytimes.com/2009/11/03/health/03asperger.html?hpw