One of the great challenges as a parent or caregiver is to understand the nature of the disorder that confronts your child or loved one. Questions about the range of “normal” behavior abound as parents seek to compare notes with other parents and friends about what their child is doing and if it is consistent with the experience of other parents.
This happens almost immediately with the physical aspects of any given child as birth weights and lengths of babies are compared to charts of normal ranges try to assure that their offspring is in the “normal” range or that their child excels in their development. Lots of developmental measures are used to test responses to stimuli and function of organs and systems.
A few months later, as the development process begins to show sophistication and adaptation of the new person to their environment, more behaviors begin to be observed. At this time, some children are observed to be remarkably different from their peers with items like crying behaviors, sleeping patterns and other outward signs of function. All the while, parents continue to monitor this progress and compare it to their other children, other friend’s children and descriptions of events in child development literature.
Physical health seems to be understood and tracked with considerable precision. The development of teeth and the introduction of solid foods into the diet are well documented and gross physical abnormalities are noted and care taken to remedy the afflictions present.
When the child is old enough to be socially responsive, it is often thought that parenting style and skill is the critical element in shaping behavior of the young child. Indeed, there are “experts” who claim that they can resolve sleep behavior disorders in any child and guarantee results.
No doubt, many of us who have experienced the rigors of child rearing have noted the dissimilarities of our children and noted that the first child is quite different from subsequent children. This occurs in spite of the fact that the parents are the same and the actions taken by the parents are similar if not extremely consistent.
Many of us who have raised children that have presented difficult behavioral challenges have heard the whispers about “poor parenting skills” and the idea that “I would never tolerate that kind of behavior.” It comes with the territory of having a child that exhibits behaviors that are quite different from peers and siblings.
The Psychiatric community seems to take great care to leave the concept of serious mental illness and particularly the labels of serious mental illness reserved for use a bit later in the developmental process. Indeed, Psychiatry itself struggles with the definition of illness as a construct. The manner by which psychiatric diseases are defined is by convention of a set of functional definitions that are collected in a diagnostic manual that is used to codify the various diseases.
Why, might one ask, if there are medical tests for blood sugar and diabetes, are there no similar tests for the major illness that are defined in the diagnostic manual DSM-IV? The answer lies in what we do and do not know about the nature of psychological disorders. Dr.William Wilson of Oregon Health and Science University provides some insight into the history of the definition of mental illness by describing the early attempts to quantify the diseases that we express today in DSM-IV, the guidebook for diagnosis of behavioral health.
“The DSM-IV construct is based largely on the way that Emil Kraepelin divided up "mental illness" in his textbook of psychiatry published around 1903. He worked in the same German psychiatry department as Alois Alzheimer. At that time academic psychiatry was preoccupied with the phenomenological description of madness--minute description of symptoms and courses of illness. Alzheimer made his fame by describing the "dementia" that occurred in old age. Kraepelin worked on the type of "dementia" that he saw as coming early in life: "dementia praecox." Alzheimer became famous because the brains of the people he studied had readily identified pathology at autopsy--findings that could be seen with the light microscope. Kraepelin was forgotten by nearly everyone because the brains were not normal, but had no consistent abnormalities. There seemed to be nothing biological to define this group of people. The Kraepelin's contribution to knowledge seemed simply to be to divide youthful madness into two broad categories: the "dementia praecox" and manic depressive illness. It remained for others to determine if these categories had any reality based on biology.”
Indeed, the history of Psychiatry is based upon the categorization of observable symptoms that clearly exist. Ancient writings and descriptions of behavior provide evidence that madness has been around in some form as long as there has been writing to describe it. The greater challenge today is not whether or not madness exists, but what we really do or do not know about the nature of madness as an expression of physical characteristics.
The history of Psychiatry, as most disciplines, has a momentum and builds upon its foundations. Again to quote Dr. Wilson;
“Swiss psychiatrist Eugen Bleuler took Kraepelin's "dementia praecox" and lumped it with less severe, more transient psychotic illnesses, terming the whole thing "schizophrenia." The psychoanalysts adopted that term for perhaps an even broader group of people.
In the last quarter of the 20th Century much of American psychiatry turned away from the "lumping" to go back to the more precise "splitter” categorization style. These "neo-kraeplinians," largely out of Washington University in St. Louis led the development of the DSM-III, which defined "schizophrenia" in terms very similar to "dementia praecox" simply as a heuristic--a more or less arbitrary way of dividing up illnesses that seemed to make sense and which could be the basis for further research. These criteria have been carried forward into DSM-IV and the current version DSM-IV-TR with little revision.”
From the perspective that “modern” and “Western” medicine uses to look at disease, Psychiatry suffers from the roots of its origin. While other diseases benefit from the ability to draw blood and make rather precise measurements of chemical components, psychiatry continues to be both helped and restricted by the manner in which the diseases are defined. Put simply, there are those who simply reject the notion of pathology of the brain and psychiatry as a construct. Some go so far as to suggest it to be a fabrication that lacks empirical evidence of its existence. This is an outgrowth of the inconsistency of abnormality noted by Kraepelin.
Those that doubt the existence of psychiatric disorders or question their validity perhaps share a kinship with those that believed the world to be flat. While there might be room to question the manner by which the diseases are defined, there can be little question that there are expressions of brain function that display abnormality and that respond to therapeutic measures of many differing types. The problem is in gathering research to assist in the definition of the diseases and whether or not that is possible in the traditional sense of medicine and research.
To understand the complexity of the process, we need only look at the blood glucose system that is involved with Diabetes. The Blood Glucose control system is a well-defined process with very observable and quantifiable components. However, even those diseases have suffered from labeling such as “sugar” diabetes that suggests the nature of the disease was simply an intolerance of sugar that belies its overall complexity. While all macro nutrients are different in their characteristics and the various foods that an individual eats are innumerable, the end result of the process is pretty much reduced to processing of glucose by the cells in the body. Psychiatry and mental processes on the other hand, are extremely complex and behavior is subject to both internal and external controls. Neurotransmitters and brain development are orders of magnitude more complex and while gross functions and some more intricate characteristics are known, much of the detail is not yet understood.
Current trends are looking for greater details in the causes of what is currently a “melting pot” of disorders. As Kraepelin and Bleuler struggled to categorize disorders without benefit of genetic research and modern technology they relied upon observation as their best tool to develop understanding of the disorders they encountered. That we still use their observations as the basis for classification is both encouraging and disheartening. In more than 100 years we have not had significant breakthroughs in the classification and diagnosis of “madness.” We have, however, moved forward with improved treatments and greater understanding of the complexity of the task.
Dr Wilson describes the current progress as follows:
There are now a number of genes that are known to be associated with schizophrenia. None of the genes seems to confer schizophrenia on its own. All of the genes have something to do with neuronal development or function. If an individual has only one or two of the genes, accommodation is possible, but if a number of genes come together, the brain is not normal enough to compensate, and the individual "has schizophrenia." If this really is the way schizophrenia works, then it makes sense that there would be as many different forms of schizophrenia as the ways to combine these genes are virtually infinite, so that each person would seemingly have his or her "own illness." However, it would also be likely that there would be more or less distinguishable groups based on clustering of genes, perhaps explaining things like good- and poor-prognosis states, etc.
My hope, and expectation, is that the genetics of schizophrenia becomes much more refined so that eventually the term "schizophrenia" may be replaced with specific genetically based diagnoses. "DSM-IV schizophrenia" will become a quaint, outdated notion, like "dropsy" or "the vapors."
So what does this mean for the family that sees their child as varying from the “normal” in their developmental path? For the moment, we struggle with a diagnostic and treatment system that does the best with what it has to work with. From the beginning, observations have been made about a wide variety of symptoms. Some disorders are present at birth, some come later in life, some have a better prognosis, some worse. Some medications and therapies work better than others, some are effective in different patients. While there are tendencies, there are also exceptions to those tendencies. Each person’s perspective is shaped by their personal experience and the experience of their children or loved one. None of this is easy, but we can all hope for the days ahead when categorization tools like DSM and its descendants will be able to include better ways to define madness than simply observing behavior and comparing it to lists of symptoms.
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