As has been widely publicized and discussed, the American Psychiatric Association (APA) has recently issued a revised version of the Diagnostic and Statistical Manual of Mental Disorders (DSM), a book sometimes termed a “bible” for mental health professionals. The manual might better be called a dictionary, as it aims to provide a vocabulary established by general (though not unanimous) agreement among mental health professionals so that they can productively discuss how best to help people who exhibit disabling emotional and/or intellectual conditions. The diagnostic labels and the lists of elements for each that appear in the manual are the product of votes taken at general conclaves held, often decades apart, by the APA after recommendations are made by committees assigned to explore current research and experience around specified types of emotional and/or intellectual dysfunction. As its authors would be the first to admit, the DSM’s resulting diagnostic categories and constituent elements are far from perfect and, while intended as a tool to help clinicians, should be used with skepticism and with a heavy dose of direct and personal clinical judgment.
The introduction to the current version of the manual, the DSM-IV, cautions users (as the new DSM-5 will presumably also do) that they should treat the diagnostic criteria and definitions of disorders as “guidelines to be informed by clinical judgment … not to be used in a cookbook fashion.” Clinicians are advised that their observation and clinical judgment may warrant the application of a diagnosis even if the subject’s symptoms do not meet all of the DSM criteria, “as long as the symptoms that are present are persistent and severe.” Because the purpose of the manual is to provide a reliable common language for professionals engaged in treatment and research, however, the user is cautioned not to veer too far from its listed criteria lest they become meaningless.
Although the DSM is meant to serve as a clinical tool, it has come to be used by insurers and by private and public institutional providers – often including public school systems – as a gateway to benefits. When fiscally-strapped providers use the DSM as a tool for triage, lock-step denials of access to services inevitably result. Compounding the problem is the lack of clinical qualifications of many who mind those gates and who are all too ready to deny services based on an individual’s failure to fit perfectly under a diagnostic label.
The new updated manual, DSM-5, is the first to be issued since 1994. It will include a number of uncontroversial changes meant to update the categorization of disorders based on research and usage in the last two decades. An example of such a change is the use of the term “intellectual disability” in place of “mental retardation.” In connection with that change, the manual will call for diagnoses to be based less on IQ scores and more on clinical assessment of an individual’s functional abilities – a welcome change to those who advocate for services for persons with cognitive impairments.
The new version will also include some controversial changes that have caused anxiety and concern among those who perceive that they will be directly affected. Chief among those changes is the deletion from the DSM of categories associated with autism that previously carried their own lists of diagnostic criteria: Asperger’s Disorder; Childhood Disintegrative Disorder; and Pervasive Developmental Disorder, NOS. The sense of those who support these changes is that the common elements among these disorders warrant using only one diagnostic category, Autism Spectrum Disorder, with diagnosticians indicating a level of severity once they determine the presence of the elements that support the diagnosis. Many parents, advocates, and affected individuals, however, have voiced concern that the removal of these specific categories of autism from the DSM will result in some individuals’ losing the diagnostic definition altogether and, along with that, losing the services for which the diagnosis may have previously qualified them.
The DSM-5 attempts to ease these concerns some have raised by advising that “individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.” The DSM-5 also includes a new category, Social Communication Disorder (“SCD”), meant to catch some who may fall outside of the Autism Spectrum Disorder category for lack of one or another element of the definition. An explanatory memo from the APA states that ASD must first be ruled out and that “SCD is characterized by a persistent difficulty with verbal and nonverbal communication that cannot be explained by low cognitive ability. Symptoms include difficulty in the acquisition and use of spoken and written language as well as problems with inappropriate responses in conversation. The disorder limits effective communication, social relationships, academic achievement, or occupational performance. Symptoms must be present in early childhood even if they are not recognized until later when speech, language, or communication demands exceed abilities.” (One commentator has suggested that this new category might be called “autism lite.”) Since it will take time for research to build data specifically focused on such a new category, and particular service strategies will need to be borrowed from previous experience with other comparable disorders to address the needs of those who may shift, for example, from PDD-NOS to SCD, some wonder whether the latter will simply become a label without reliable treatment options for the foreseeable future.
Another change will be the introduction of Disruptive Mood Dysregulation Disorder (“DMDD”), aimed at sidestepping the controversial use of Bipolar Disorder as a pediatric diagnosis. (See a description of this new category here.) Again, the newness of the diagnostic category means that service strategies will not have been clearly defined, though much research and experience based on older comparable categories of disorder will likely be relevant. For a thoughtful discussion of the reasoning behind the creation of this new category and of some concerns about its effects, see this article.
For parents and advocates in the field of special education, we can expect that any change in the words used to define a disability will bring with it arguments over interpretation, which, in an adversarial system – i.e., where parents seek services that districts would rather not provide – will lead to delays and/or denial of services. (As a school-side special education attorney once wryly commented: “Every time a word is changed in the statutes and regulations we practice under, it means at least a hundred hours of billable time.” The same thing might be said of changes in diagnostic categories.)
Many issues will likely arise for parents and advocates as new DSM diagnostic categories and their ramifications are discussed in the process of evaluating children and developing IEPs (or not) for them. We expect to return to this subject in later posts as the process unfolds. At the outset of this transition, though, we would suggest that participants keep in mind the very real difference between DSM-5 diagnostic categories and the definitions of “disabilities” in the state and federal statutes that govern our work.
The criteria for eligibility for special education and/or related services, as set forth in IDEA and in Massachusetts’ (and probably most states’) special education laws and regulations, do not refer to the DSM. In fact, those definitions are generally broader than what appears in the DSM, and accordingly should provide greater access to services. For example, Massachusetts’ regulations define autism (at 603 CMR 28.02(7)(a)) as a “developmental disability significantly affecting verbal and nonverbal communication and social interaction,” and refer to the federal definition of autism found at 34 C.F.R. 300.8(c)(1) for elaboration. That federal definition states: “Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.” An examination of the new DSM-5 criteria for an autism spectrum diagnosis reveals a long list of component elements. Parents and advocates should keep firmly in mind, however, that those elements are not essential to a child’s meeting the definition of autism under state and federal special education law. (This is not to say that some school districts will not insist on an official DSM-5 diagnosis of autism spectrum disorder before finding a student eligible for special education, but rather that there may be serious grounds on which to challenge such a denial, based on the actual words of IDEA and state law.)
Likewise, while many different diagnoses found in the DSM-5 to describe emotional disorders are based on lists of elements specific to each, the definition of “emotional impairment” under IDEA and Massachusetts law is broader. Put another way, being diagnosed with a mental illness under a DSM-5 category would probably be sufficient to satisfy the definition of “emotional impairment,” but would not be necessary if the student otherwise fits the following definition from both federal and state regulations: “the student exhibits one or more of the following characteristics over a long period of time and to a marked degree that adversely affects educational performance: an inability to learn that cannot be explained by intellectual, sensory, or health factors; an inability to build or maintain satisfactory interpersonal relationships with peers and teachers; inappropriate types of behavior or feelings under normal circumstances; a general pervasive mood of unhappiness or depression; or a tendency to develop physical symptoms or fears associated with personal or school problems.” 603 CMR 28.02(7)(f) (referencing 34 C.F.R. 300.8(c)(4)). To the extent that IDEA’s or state law’s definitions of disabilities are broader than those that appear in DSM-5, a district’s attempt to insist that a student meet DSM-5 criteria would have to give way as illegally narrowing eligibility for special education.
There will be more to come on the subject of DSM-5 as a factor in special education process. Watch this space!