A Diagnosis By Any Other Name…

arosebyanyothername
photo by Jeff Epps

This is a good time for me to talk about my son’s diagnosis of schizoaffective disorder. Or is it spelled schizo-affective disorder?

I received an email from the blogger at Me and My Beast, Jason Wilson.

Hero,

I’m curious, how did your son’s diagnosis change from schizophrenia to schizoaffective?  The reason I ask is that nothing from what I’ve read (and I apologize if I’ve missed something so far) indicates that he has a mood disorder as well.  Does he have a mood disorder and were his psychotic symptoms present during a “normal” mood (i.e. not elevated extremely to be manic and not extremely depressed)?  As you may have already read from my blog, I have schizoaffective as opposed to schizophrenia because I also have bipolar so I’m just curious not that it really matters whether he’s diagnosed with schizophrenia or schizoaffective as the psychotic symptoms are treated in the same fashion.

And I answered:

Thank you so much for the question. I KNEW I would learn a great deal when I started this blog. Nobody explained it to me before, that schizoaffective disorder is schizophrenia combined with a mood disorder. That makes sense now. I suppose I could be blamed for not studying it more.

Now I am not exactly sure what mood disorder means, but I will strongly agree that my son is having trouble with his mood. As I detailed in Onset of Illness , one of the first clues I had that something was going seriously wrong was his crankiness. He also seemed to be sad and negative much of the time.

At the one visit we had with Dr. DB in May, the subject of DS’s hospitalization for schizophrenia in 1998 came up. DS wanted to argue about the validity of the diagnosis of schizophrenia. Dr. DB dismissed the whole subject, rather wisely I would say, to avoid a whole lot of ugliness of mood on DS’s part, by asserting that the diagnosis names do not matter… he treats the symptoms.

I can understand that. With my previous experience with my son’s diagnosis of autism/Asperger’s, I learned that the definitions in the DSM can change. That could be one reason why DS was not diagnosed with it until he was age 17.

To answer your question more directly, I would say the diagnosis of schizophrenia was given in 1998 and the diagnosis of schizoaffective disorder in June 2007. He still has the diagnosis of autism or Asperger’s syndrome and always will. I remember being told a long time ago that it is not very unusual for a second thing to go wrong with the brain once one thing has gone wrong. An interesting thing about autism is that in the old days (like before 1940) it used to be called childhood schizophrenia. It is a good thing they renamed it, because calling it “childhood___” gives you the false impression you can outgrow it.

You asked if the psychotic symptoms were present during a “normal” mood. I think no. DS is not always very open, and my best guess is the mood disorder came on first. Then again, he has always been somewhat inclined to paranoia, or what they call in autism circles “irrational fears.” I do not believe he was having major delusions or hallucinations until after the negative mood change was well underway.

I did not hear that DS’s diagnosis was schizoaffective disorder until after his second hospitalization in 2007, in July. I was trying to get the paperwork done to get him into a personal care home, and they wanted to know what his diagnosis was. When I asked DS (when he was not in a mood to deny being ill at all) he would say he was bipolar. That did not sound right to me because I though bipolar meant highs and lows in mood, and nothing at all to do with paranoia, delusions, and hallucinations. When he was being delusional he would simply say he was a drug addict, because he thought the drugs he was hallucinating about were making him high and causing him to become addicted.

Anyway, I called Wellstar Behavioral Health hospital to get the diagnosis. I was surprised when a social worker actually answered my question… surprised because I assumed they would brush me off like they usually would do when I would ask for information that could be construed as violating DS’s privacy according to HIPAA. I suppose because I explained the situation about filling in the forms for the personal care home, they may have cut me some slack.

As Jason and Dr. DB said, names probably do not really matter since the symptoms are what are treated. 

Then again, nobody with cancer or diabetes is ever told, “don’t worry about the diagnosis; we are just going to treat the symptoms.”

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