The Brain Shell Game


With all the awareness that’s been raised over the past several years about autism, many people now realize that there are several forms of this organic brain disorder- gradations, if you will. Autism is a spectrum, including Pervasive Developmental Disability – Not Otherwise Specified (NOS) on one end, Asperger’s Syndrome somewhere in the middle, and severe, non-verbal autism on the far end. They have symptoms in common enough to group them as autism spectrum disorders, but different enough to separate into different diagnoses.

Mental illness – another organic brain disorder – is no different. No one is simply “bipolar” or “schizophrenic”. It’s usual for someone with a mental illness to have their diagnosis refined over time along the spectrum as symptoms evolve or, as is often the case with children, symptoms are better defined with age. And, with children, it’s not uncommon for a child to be thought to have one of several types of organic brain disorders, and have that diagnosis revised over the years.

How could this be? It’s relatively easy to understand, if you understand how often the symptoms of one issue overlap with the symptoms of another. Let’s do a little experiment. I’ll list some symptoms, and some possible diagnoses, and let’s see if we can match column A with column B:

Symptoms:

  • Difficulty or inability to read social cues
  • Impulsivity or inability to wait for a turn
  • Easily agitated
  • Angry outbursts / tantrums / rage
  • Trouble staying focused
  • Repetitive behaviors / rituals
  • Language or speech delays
  • Inappropriate laughter or crying
  • Odd or irrational speech

Possible Diagnoses:

  • Early Onset Bipolar Disorder
  • Attention Deficit Disorder
  • Early Onset Schizophrenia
  • Autism

Ding! Time’s up. Which one of the brain disorders do the symptoms suggest? The answer? All of them. All four of these illnesses can have any or all of the symptoms listed. When you wrap your head around that, you realize what an amazingly inexact science psychiatry is.

This is our history with Tim. Tim was first diagnosed with PDD-NOS, an autism spectrum disorder, at age 4. He was treated at one time for ADD (I’ll blog about that sometime – what a nightmare). His diagnosis evolved to mood disorder – NOS, to bipolar disorder – NOS (NOS basically stands for “we don’t know yet”), then Bipolar Disorder Type II, Then Schizoaffective Disorder. And, since he’s only 15, I don’t begin to think we’ve nailed down a diagnosis yet.

WARNING: MINI RANT BELOW

This is what aggravates me about people like Jenny McCarthy, who proclaim they have “cured” autism. I would bet her $1 million that her son has never truly had autism – that was just his primary diagnosis. People like her are dangerous – they give false hope to parents who are struggling to help their children who may have some actual brain disorder, and, I feel, damage the cause of those truly trying to find a cure for and help parents dealing with autism in their families. I feel confident that, someday in the future, Jenny would be writing me a check, if she’d take that bet.

When you boil it all down to its most base form, the diagnosis isn’t really all that important. It’s not like you’ll wake up someday and say, “wow, my child is schizophrenic – now I know what to do!” The diagnosis doesn’t change the child, his or her symptoms, or how they must be managed. But having as accurate a diagnosis as possible does serve a purpose: for us, it got us the services we needed to get appropriate care for Tim, qualified him for specialized schooling through the school district, and got our insurance company to cover some very expensive medications. None of these things would have been possible without his current diagnosis. It’s been a shell game – lifting a new shell every time the symptoms seemed to evolve, to find a new doctor, a new treatment type, a new medication, and a new DSM-IV to help line up the support we’ve needed. Right now the ball is under the “schizoaffective” shell, but I have no illusions that it will remain there the next time we rearrange the shells.

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