The Diagnostic and Statistical Manual
The Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, was launched in May '94 in its fourth edition. A year later, fallout from this launch is reaching the Autism National Committee and other advocacy groups nationwide: the Diagnostic Wars continue.
The DSM, the standard source for uniform diagnostic terminology in hospitals, court cases, and insurance claims, has seen many diagnostic fads and fashions come and go during its four editions and one interim revision. At 886 pages and $55 a copy (not counting the 10 to 12 "essential companions," which include a $125 sourcebook, DSM reference books, and DSM computer software), the DSM-IV is a major source of revenue for the American Psychiatric Association, selling to the tune of $18 million in the first 10 months of publication. The categories which are enshrined in any given edition of the DSM attain a legitimacy, and a "bill- ability," on which careers are built.
From its early incarnation in 1968 as a tiny booklet of 134 pages, to the more recognizable DSM-III of 1980 which listed 106 disorders, those categories have now ballooned to 300. Various offerings of the DSM-IV, including Disorder of Written Expression (symptoms include poor use of punctuation, awful spelling,and bad handwriting) and Oppositional Defiant Disorder (over a period of six months a child manifests any four of a list of eight behaviors, including losing his temper, arguing with adults, annoying people, and blaming others for his own misbehavior) have already been the subject of satire and media mirth. Not surprisingly, many critics question whether such diagnoses reflect medical science or the social angst of 1990s middle-class America.
The DSM-IV continues to employ the general classification of Pervasive Developmental Disorder (PDD) for the range of individuals with neuro- physiologically-based social and communicative impairments. However, in distinction to its previous incarnation, the DSM- III(R) of 1987, which recognized only two categories of PDD (Autistic Disorder and PDD Not Otherwise Specified), the fourth edition splits the PDD group five ways: Autistic Disorder; Rett's Disorder, a regressive disorder involving constant and repetitive hand movements which is found only in females; Asperger's Disorder, sometimes referred to as "high functioning autism" and characterized by "no clinically significant general delay in language"; and Childhood Disintegrative Disorder, so-called in the belief that some children develop normally until some time between two and ten years of age, at which period they lose motor, verbal, or social skills; and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) for cases which are "close but not quite," lacking sufficient features to fit any of the above categories.
Parents are being joined by many researchers in questioning whether these new categories are justifiable, or represent the well-known disorder of "hair-splitting behavior." Asperger's, for example, has generally been considered synonymous with "autism." In 1944 Hans Asperger, working in Vienna, identified and described a syndrome virtually identical (though wider in range) to the one independently proposed by Leo Kanner of Johns Hopkins in a publication the previous year.
DSM-IV: The Empire Strikes Back Page 2
However, due to the upheavals of World War II and the fact that Asperger's work, written in German, was not translated into English for some time, his contribution was relatively little- known until recently.
Asperger, like Kanner, was able to characterize a number of children as having relatively non-delayed language development and good cognitive skills because those children had speech. Just as we are becoming more fully aware that language may develop in the absence of an ability to speak, and that assumptions about cognition may have more to do with our judgments of how disabled a person appears rather than with questions of their capacity to adapt and learn, why would we choose this moment to embrace a diagnostic category based on such dubious criteria?
Curiously, while the Diagnostic Criteria for Asperger's insist that the child must display "no significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood," the Criteria also insist that the child demonstrate "restricted repetitive and stereotyped patterns of behavior, interests, and activities" such as "restricted patterns of interest" and "inflexible adherence to specific, nonfunctional routines or rituals." It doesn't take a rocket scientist to point out that these Diagnostic Criteria are mutually exclusive.
With Childhood Disintegrative Disorder, the DSM appears to be describing victims of a faulty teleporter transfer or an alien phaser attack in the Diagnostic Wars. Not only is the name unnecessarily terrifying, but the proposed condition, despite the fact that it is annotated by the DSM-IV as "very rare," is now being widely diagnosed simply because many if not most children with autism go through an early period when they regress in motor or verbal skills (the criteria for Childhood Disintegrative Disorder set this period at ages 3-4 "in most cases"). ________________________ Assumptions about cognition may have more to do with how disabled a person appears rather than with questions of their capacity to adapt and learn. ________________________ In those even rarer cases, within a disorder already described as "rare," in which the DSM suggests that autistic-like responses suddenly erupt at a later stage of childhood, one might suspect the onset of a serious medical condition rather than "instant autism." (One also wonders how many cases it takes to merit a separate diagnostic category, rather than an open assignment to PDDNOS until clearer information is at hand.) The validity of a category for Rett's Disorder seems less problematic. Although it is extremely rare, it appears distinctive in its pattern of head growth deceleration, loss of purposeful hand skills, development of stereotyped hand- wringing movements and poorly coordinated gait and trunk movements, and in the fact that it has been found only among females. Although the movement problems are an intriguing clue, no one can specify what, if any, relation Rett's Disorder may have to "autism."
With Autistic Disorder we are given Diagnostic Criteria focusing on impaired social interaction, qualitatively impaired communication, and restricted repetitive and stereotyped patterns of behavior, interests and activities. The predecessor of the DSM-IV, the DSM-III(R), included in this list of criteria "abnormal or inconsistent responses to sensory stimuli." Quite surprisingly, given the growing body of research data and the autobiographical testimony of individuals such as Donna Williams who find this issue to be central to their autism, this diagnostic symptom has been demoted in the DSM-IV from the Diagnostic Criteria to the "also- ran" category of "associated features" which may or may not be present!
In describing Autistic Disorder, the DSM-IV notes that "Manifestations of this disorder DSM-IV: The Empire Strikes Back Page 3
vary greatly depending on the developmental level and chronological age of the individual." In fact, many researchers question whether the basic problem with the DSM's entire consideration of Pervasive Developmental Disorder is simply that developmental levels or stages ________________________ The syndrome approach is not a functional approach, and only a functional approach to what the person actually does in his or her environment can give us the strategies and the answers we need. ________________________ have been reified -- that is, given names such as Asperger's or Childhood Disintegrative Disorder as if they were separate conditions present from birth -- when in fact they represent "slices of time" or "freeze frames" in a developmental process which is still poorly understood.
It is helpful to remember that the debates of the Diagnostic Wars are ultimately artificial. Until we can connect these syndromes, or collections of traits, with their underlying neurophysiological causes and explain the behavioral results as they unfold developmentally, they will remain of limited use. The syndrome approach is not a functional approach, and only a functional approach to what the person actually does in his or her environment, to strengths, competencies and potential rather than a superficial list of deficiencies, can give us the strategies and the answers we need.
Without that commitment to see the whole person, we remain vulnerable to the seductive power of labeling systems like the DSM, all too easily mistaking their transient categories for concrete reality and their classifications of "disorders" for classifications of people. That is the "dark side" of the DSM, and when we succumb the Empire wins.
This article was published by the Autism National Committee in 1995.