There is a lot of confusion around schizophrenia. I was recently reading a website clearly written by a bunch of amateurs that was attempting to explain “splitting” in the borderline personality. They then went on to say that splitting might remind us, the reader, of schizophrenia because of the clear identity disturbance associated with splitting. I was shocked, but I suppose I should not have been. The authors of this website were confusing schizophrenia with Dissociative Identity Disorder (DID). Sometimes it feels like we’re still living in the Dark Ages.
I don’t know that I’ve written a post about how schizophrenia is defined. Many of us know that bipolar disorder is divided into two subgroups of symptoms: mania and depression. Depression is a unipolar illness. Schizophrenia is classified by negative, positive, and cognitive symptoms. The negative symptoms refer to the absence or diminishment of normal function. They are:
- Loss of interest in everyday activities
- Appearing to lack emotion (this refers to the flat affect that is typical of those with schizophrenia)
- Reduced ability to plan or carry out activities
- Neglect of personal hygiene
- Social withdrawal
- Loss of motivation
This sounds a lot like depression, and on its own without the positive and cognitive symptoms it probably would be. The positive symptoms refer to an abnormal distortion of normal behaviors and functioning, and they might include:
- Delusions. These beliefs are not based in reality and usually involve misinterpretation of perception or experience. They are the most common of schizophrenic symptoms.
- Hallucinations. These usually involve seeing or hearing things that don’t exist, although hallucinations can be in any of the senses. Hearing voices is the most common hallucination among people with schizophrenia (Grace hears the footsteps of the men whom she sees although she does not hear them speak to her).
- Thought disorder. Difficulty speaking and organizing thoughts may result in stopping speech midsentence or putting together meaningless words, sometimes known as word salad (Word salad has not been uncommon with Grace. It is an odd thing to see. An example of Grace’s word salad: “I want to buffalo was on the couch, and the television was on but I don’t know if I’m hungry, and I can’t decide if I want to drink that.”).
- Disorganized behavior. This may show in a number of ways, ranging from childlike silliness to unpredictable agitation (Disorganized behavior is very common in our home).
Grace has schizoaffective disorder which is on the schizophrenia spectrum. When she is not properly medicated she experiences almost all the aforementioned positive and negative symptoms including mania from time to time. With the right cocktail of drugs, the mania and much of these symptoms are reduced, but if the drugs are not working Grace struggles with something called a “mixed state” which is very dangerous because the rate of suicide tends to be highest during mixed states. A mixed state in Grace happens when she experiences mania, negative, and positive symptoms all at the same time. It is excruciating to watch. To me, it a new kind of torment and suffering that no one should have to endure. I believe it’s the mixed state that has caused people to confuse schizophrenia with DID due to the rapid mood cycling.
There is one more classification of symptoms associated with schizophrenia, however, that drugs really can’t treat very well–cognitive symptoms. Cognitive symptoms include:
- Problems with making sense of information
- Difficulty paying attention
- Memory problems (online source)
According to a new study in Neuron, “Cognitive symptoms of schizophrenia include problems with memory and behavioral flexibility, two processes that are essential for activities of daily living. These symptoms are resistant to current treatments.” (online source) In other words, the working memory issues and problems dealing with daily stress that plague people with schizophrenia are inherent to the disease. Grace’s working memory is in the 3rd percentile. She struggles daily with basic activities of daily living simply because she can’t remember why she left one room and went into another. She works very hard to be flexible, and this hard work increases her anxiety levels to the point that she gets stress headaches and stomach aches.
We went shopping for a pair of new shoes for her yesterday, and it was very hard. Much harder than it was two years ago. Decision-making requires a herculean effort on her part, and I have to work hard to be patient. Milly needed new shoes, too, and that’s nightmarish. She has Sensory Processing Disorder (SPD) which is one of the most common co-morbidities with autism spectrum disorders so taking Milly shopping for shoes is like taking the princess from The Princess and The Pea shopping for mattresses. It tests my mettle.
All this is to say that schizophrenia is not DID. It’s not depression. It’s not bipolar disorder. It’s a neuroprogressive disease, and many symptoms do respond to the right combination of drugs. There are, however, symptoms that do not, and those symptoms, the cognitive symptoms, affect daily living and determine, in large part, how successful a person with schizophrenia feels about their daily life and treatment plan. Surprisingly, I am meeting a lot of clinicians who don’t seem to know jack about the cognitive symptoms, and that’s not acceptable in my book.
So, what can be done? Grace’s case manager and I are making it up as we go. We are getting her set up with skills training. I don’t really know what that means yet, but I’ll let you know when I know. I believe that there must be a comprehensive plan that can be created to support a child with early-onset schizophrenia so that they can flourish and progress WITH–not in spite of–their illness.