Approaching A Taxonomy 21.

This manuscript focuses on persons with developmental disabilities as a group and some of the common conditions or factors associated with that group generally. These are fairly constant and can be considered as principles or formulae that may clarify or help professional neonates. Knowledge and application of these guide posts should also decrease treatment error on the part of team members who happen to be considering the development of short and long range planning 

Society has been classifying people, animals and plant life for centuries. It has become a systematic procedure. As well, people who have a variety of disabilities have been placed in groups and sub-groups, a rigorous but semi-scientific accomplishment over the past 100 years. This can result in the development or evolvement of factors (common denominators) which characterize generally the group or sub-group in question.

The following are attempts toward that end. These are generalized concepts based on research and knowledgeable understandings historically passed from one generation to another by way of literature and dialogue. They might be considered as classic and for the most part working principles or formulae for the present and future in the field of cognitive delay/damage. Of course, imperfections in these principles can be found chiefly because people within these groups do not always reveal a single symptom or pat syndrome with identical behavioral outcomes; causes can be many and sometimes in complex combination; personality characteristics and patterns of ability also can vary substantially; a clear set of diagnostic signs with a few exceptions pointing in the direction of a specific condition or disease often do not exist. Someone once said, trying to clarify, "it is a state of impairment" which is an over-simplification and implies a static phenomenon, an incorrect assumption.

Caretakers and members of the treatment team in community facilities may view what follows as relevant knowledge associated with the field and primary introduction to the gamut of care receivers needs. However, human variability within demands services, planning and treatment geared for individuals inside a parameter calling for a self-advocacy human rights and freedom to choose philosophy.

To simplify and retain a strong degree of consistency, the term developmentally disabled (cerebral palsy, autism, epilepsy, mental retardation) will be utilized with particular emphasis on the latter. The following is a condensation relative to each topic.

1. Trans Human Characteristics: Everything found in the so-called "normal" person can be found in people with developmental disabilities. Some think personality composition is distinct from other people. This is not so. The same attitudes, traits and characteristics or ways of reacting are manifested by all people; frequency and intensity may vary, but the idea of a continuum persists. The same non-intellective features flavor each personality. Reactions and patterns of adjustment, voluntary or involuntary, play a primary role in how people generally get along in society. These patterns are demonstrated as part of a repertoire by those who are developmentally disabled. They employ common emotional avenues of attack and escape when frustrated with day to day events.

2. DD-MI Dichotomy: At the turn of the century Medical School professors taught that people who were developmentally disabled could not have a psychosis (MI) in tandem. It was either one or the other. The former and the latter were distinct entities, a virtual dichotomy. Anyone with that condition could not be mentally ill, disturbed or emotionally unbalanced. They were not prone to symptoms of psychopathology. Knowledge, at the time may have been most primitive or scholars were unwilling to change this belief. Further, the field at the time relative to the total medical curriculum was usually elegated to one short chapter, a minuscule segment. Decades of research have reversed such didactic thought among professional scholars and practitioners.

3. The Dually Diagnosed: This term is used currently to describe the person with developmental disabilities who manifest also evidence of a thought disorder or psychopathology. It happens to be the "new nomenclature" or term of deliverance. It is another name for the mentally ill individual who also reveals a composite of variables associated with serious functional disablement, i.e. maturational, psycho-social, medical, educational, and vocational. A few decades ago the condition was identified as "mental retardation associated with psychosis". Compounding the picture are those who show a "poly" pattern. Determining this diagnosis today can be a formidable task for the fresh and unblemished practitioner.

4. Clustering: People with one defect or anomaly tend to present other anomalies or deformities. When one is noted there exists a high probability that others can be found. They may not be visible but might be located in the body cavity or beneath clothing. Further, people with developmental disabilities can readily harbor other inefficiencies, sensory, anatomical or physiological, which when found might be reduced or corrected through appropriate treatment. The diagnostician can become suspicious when one weakness or malformation is uncovered.

5. Inverse Correlation (physical and intellectual properties): Within the developmentally disabled spectrum, there is a continuum demonstrating an opposite relationship between level of intelligence and anatomical, sensory and physiological problems. In other words, the lower the IQ or more severe the disability, the higher the number of medical/nursing concerns. To carry this two steps further and outside the defined spectrum it has been found that efficiencies continue to increase comparably among those close to the mean of the general population and then in turn increase comparably among the very gifted or at the far end of the continuum to the right.

6. Multi-Symptomatic Diagnosis: Adults with developmental disabilities are so diagnosed after many factors regarding their lives and their person are assessed. At least this should be the case. A test score (IQ) as an example reflects only one symptom or aspect of a highly complex organism. The IQ can be given substantial meaning and interpreted correctly in relation to the "total" picture which includes the markings of history, i.e. birth, maturational, educational, family, vocational and medical. A monosymptomatic diagnosis is of limited worth except in rare clinical syndromes which are diagnosable upon laboratory study and/or visual inspection. The number of diagnostically helpful symptoms or signs are minimal in infancy but increase measurably and progressively as one moves on chronologically.

7. Normal Curve and Intelligence: When biological traits have been sampled randomly, plotting results in a distribution of scores close to the shape of the Bell Curve, recently popularized by Hermstein and Murray but first characterized by Bauss in the early 1800's. Measurements of height, weight, intelligence and other human characteristics very naturally convert to such a distribution with some skewing of course. The cognitively limited or developmentally disables are located at the far end of this curve but both biological and environmental factors interact to determine level. The observer in his/her mind, will continue to determine in what proportion and intensity these interact.

8. Secondary Damage at Severe Levels: There exists a high probability of an organic history at the lower end of the developmentally disabled continuum and lesser at the higher levels of IQ within the same range. Some damage can exist also at the higher levels but this is not as prevalent as at the more provocative and disabling levels. It was thought years ago that when damage occurred early in life, it was sharp, severe and all-conquering in scope. It still can be. Later, some thirty years ago, a subtle form of birth damage was described which was barely detectable but could have an effect on school skills resulting in a learning disability.

9. Infant Study and Prediction: This can be an enigma and one must approach analysis cautiously. Conclusions regarding the intellectual function of the infant, present and future, should be with "tongue and cheek" and most obvious before making a conclusive statement. Fundamentally, the IQ becomes more reliable with an increase in chronological age. In the case of the infant one month to three years, a development quotient roughly below 60 allows for some definitiveness, a likely probability of "truth". Anything around 60, between 60 and 80 should cause one naturally to pause and reflect, not conclude.

10. IQ Loses Force with Severity of Condition: The more serious levels of developmental disability should cause the treatment team to place less emphasis on IQ and sharper focus on nursing problems, neurology, sensory issues, anatomy and other organic factors, all of which tend to be prominent within the lower spectrum. As one studies the higher levels of developmental disabilities, the IQ becomes more important and one may note the emergence of adjustment issues and sometimes psychiatric symptoms and/or disorders. In turn, sensory and neurological problems diminish in this group but IQ impacts with more subtlety and regularity.

11. Post Traumatic Dementia: This is a condition assigned to people who are over 18 years of age at the time of their particular trauma, accident or damage. For them the "developmental" stage has passed. Such critical damage can result in a functioning level far below the expected for that individual. They are not considered to be developmentally disabled. Causation is obviously different from what is found in the cognitively limited individual whose etiology goes back to a period before, during or soon after birth.

12. Behavior Modification - Methodology: An old conditioning concept involving procedures to alter human behavior positively became pervasive and applicable to people with developmental disabilities during the 1970's and then accelerated in the 1980's. These people were moved from state facilities by the thousands into private community facilities. Philosophical changes began in the 1970's with court decisions regarding "right to treatment", "due process", and "involuntary servitude". At the time, systematic in-literature behavioral procedures were introduced in practice. Elements of that format resemble the following: a. Define the problem or behavior very specifically, b. Establish a measurable baseline of such behavior, c. Formulate a plan or procedure to reduce or alleviate the behavior considering long and short term goals, d. Measure outcomes quantitatively to determine success, partial success or failure. The latter two outcomes would require further team study and perhaps a reformulation of or readjustment within the primary program; susceptibility to program change should be a constant.

13. Direct Counseling: The difficulty of counseling for those with developmental disabilities can be confounding. First, the vocabulary of the counselor should be appropriate and befitting the receptivity level of the client. This can be very effective. Secondly, persons with developmental disabilities need, and often desire "direct counseling" but only after a cautious questioning approach is offered. The client needs first the opportunity to evaluate and react. One of the major problems underlying this is communication because language skills and comprehension in these people can be quite limited. Too, the person with developmental disabilities may incorrectly give the impression that the conversation is understood. If counseling therefore is not handled carefully mis-conceptions may occur.

14. Gerontology and Retirement: Federal and state regulations have not as yet provided latitude for the aged in community facilities for the developmentally disabled. The question can be asked what happens to 70 or 80 year olds in these facilities? Should they, like all, be required to attend a workshop and meet the mandate of "active treatment" before and after daycare (workshop) each day. Some daycare programs are currently very flexible in this regard, creating senior programs (most appropriate) to meet the needs of older developmentally disabled citizens. Living arrangements can follow suit. The opportunity should be there for those who are inclined toward retirement, not of course for those who happen to be robust and would like to continue to remain active and engaged.

15. The Vitality of Social History -- Multiple aspects of background tell much about the person under study. An analysis of social history before one sees the subject in question often uncovers worthwhile and amazingly predictive information which later may or may not be verified upon full review. A person is a reflection of where he was, what he did and under what conditions. One is as one is today because of a host of life's inter-connected happenings. These connections may seem weak on the surface but can often formulate a true configuration to help persons with developmental disabilities work out their own futures.

16. The Cliche or Triteness: When staff and others generally are really stymied and "don't know" they may resort over and over to arbitrary words or statements to an otherwise complex phenomenon. In the case of a severely developmentally disabled individual for example they may refer to his/her behavior as "bored". In so doing, they utilize the "one size fits all" method of clarification when under pressure. Also, "he can, but he just chooses not to" is a reflex form of simplicity that takes the place of clinical knowledge or what is known about human behavior in this particular group. Behavior is then postulated or justified based on a seedling that has been over worked. In the case of the first, the person probably has a difficult time generating "boredom" as one knows it; and in the second, the person "can't", not "won't". This can be difficult for some to comprehend.

17. Adaptive Behavior: IQ and adaptive behavior are interlaced. Adaptive behavior is essential to properly and effectively diagnose but is should not take the place of IQ as a diagnostic tool or vice versa. For example, there are some individuals of average intelligence who display a "disabled" pattern of behavior. How does one distinguish these from developmentally disabled persons who have been placed in community arrangements? Such individuals may exhibit slight physical anomalies, speech impediments, inadequate school skills, an awkward gait and poor relationships. Should one disregard intellectual level (IQ) entirely, lumping them with people who are developmentally disabled and focusing totally on adaptive pathology, goal planning through self-advocacy and otherwise would be ineffective.

18. Where? -- The Developmentally Disabled: Theoretically, much depends on the place or environment in which people who may be developmentally disabled reside when determining the existence of the condition. It can be a very relative concept especially within the higher ranges of functioning. The culture often sets the stage for the definition in question. For example, a person in a large city may be viewed and declared as developmentally disabled but that same person in a very rural area may adapt marginally and blend with the country citizens in a low pressure small town.

19. Physician's Tributary: A new source, people with developmental disabilities, exists for community psychiatrists and family care physicians. These represent fraction of the public who had at one time been under state auspices and control for almost a century via "institutions:. They now have the opportunity to live in small private community facilities, living arrangements which have been constructed and redesigned by private owners to meet new state and federally established mandates. The trend, therefore, over the past three decades toward community-based care demands that the community physician in practice interact with entrepreneurs and caretakers for the benefit of the health of the developmentally disabled. It is now essential that the practicing physician learn about local resources and how to become skillful in dealing with para-professional disciplines and services.

20. Family: The perspective of most parents encompasses progressive growth and development from early childhood to ultimate school success, job preparation, independence and marriage. This anticipated chain of development can abort and struggle for reconciliation in the thinking of parents of those with developmental disabilities. Sometimes it is found that the disability produces an emotional charge within the family which in turn may create an unstable situation for the son or daughter so disabled. Throughout like these families are often faced with diverse issues leading to distorted perspectives. Problems during pre-school years, the school experience itself, vocational preparation, and on toward independence remain as challenges over the long run for both parents and siblings.

21. The Technique of Reassurance: Feelings of inferiority many times can cause people with developmental disabilities grief and distress, resulting in part from their inability to compete effectively with others. Acting out under these circumstances is not uncommon. Reassurance is most appropriate as a method for dealing with people who are highly suggestible. Praise and recognition can enhance their perception of self-worth. Flooding these persons with reassurance can sometimes transform them into better adjusted individuals. As self-confidence increases, reassurance gradually becomes less and less necessary.

William C. Daly, Consultant, Clinical Psychologist.

Correspondence concerning this article should be addressed to Dr. William C. Daly, 1114 W. Barnett St., Harrisburg, Illinois 69246.