In Diagnosis Dilemma, I explained that LuLu has several diagnoses that could be considered counter-indicated. The professionals (psychologists, psychiatrists, neurologists) often seem to be at odds over diagnosing children with complex symptoms that seem to overlap, yet can’t be explained by one disorder or another.

The beauty of having “friends” on listserves in cyberspace is that you get such a variety of ideas and opinions, as well as links to information from all over the world. By posting my diagnosis dilemma to my cyberfriends, I was able to get a host of well-thought-out responses. One from a woman whose background is biology and explained to me the concept of “lumpers” and “splitters”. She explained that when classifying animals into species or subspecies there are two schools of thought – those who lump characteristics together and those who parse the characteristics out. She suggested that in the field of neurology/psychology there are likely to be lumpers and splitters as well. There are those who believe that ADHD and autism are on the same spectrum, with Aspergers, PDD, etc, as points along the continuum. Those folks are lumpers for sure. There are other professionals who believe that it is imperative to search out the exact diagnosis for each individual, matching the criteria carefully, and taking however long it takes, because without it, THE effective treatment can not be found. Those folks are the splitters.

Given that the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders) categorizes disorders by symptoms, it puts neurology and psychiatry in an interesting spot. Unlike other branches of medicine, where the affected body parts can be much more closely examined, tested and treated, the brain truly remains medicine’s “final frontier”. The DSM is not without its controversies. The DSM is a human construct, and voting is the mechanism that decides which disorders are included, not some scientifically-based research. A quick look at the Wikipedia entry on DSM-IV will give you an overview of the book’s history and the controversy surrounding it:

Detractors of DSM argue that patients frequently fail to fit into any particular category or fall into several, that time limits and numbers of clinical characteristics required for a categorisation are arbitrary and that attention directed towards finding a suitable DSM category for a patient would be better spent discussing possible life-history events that precipitated a mental disturbance or monitoring treatment. Since effective treatment is the aim of the psychiatric profession they would argue that it makes more sense to regard ailments on the basis of how they should be treated rather than on deciding what clinically irrelevant differences place them in one category and not another.

So, again I ponder: What’s a parent to do?

Parenting a child with complex, overlapping disorders will eventually make you throw up your hands and say “who cares what you call it…let’s find a way to help this child!” Or at least it did me. So, by default, I’ve become a “lumper”. It’s not that I don’t want to find, or deeply appreciate the significance, of a “correct” diagnosis or that I wish to embark on interventions that will be at best a waste of time or at worst somehow harmful. It’s just that after 8 years of watching highly qualified professionals use the best tools they have available, there hasn’t yet been a single professional who could “split” out the various symptoms LuLu exhibits and say definitively – this is what she’s got! Let alone be able to tell me definitively – this is what you do about it!

But, in spite of all the pitfalls of diagnosing complex children, there are ways to learn a great deal about a child’s brain function, or dysfunction. Neurology and biochemistry rapidly advancing and answers are coming.

To be continued…

Photo credit: Picture entitled "Face of A Sad Young Lady" -- see it?