This post is part of a series of guest posts on GPS by the graduate students in my Psychopathology course. As part of their work for the course, each student had to demonstrate mastery of the skill of “Educating the Public about Mental Health.” To that end, each student has to prepare two 1,000ish word posts on a particular class of mental disorders.
Asperger’s says What? by Jordan Vanderbilt
How important is a label? Labels often come with a number of specific characteristics and a summation of these characteristics makes it easy to discuss and understand with others. For example, individuals diagnosed with a traumatic brain injury (TBI) often battle a wide variety of symptoms and deficits of a specific and individual nature. The TBI label is an easy way to describe the generalized symptoms of the diagnosis to those who are unfamiliar.
On the other hand, labels such as disabled or handicapped say very little about the limitations. If a 16-year-old girl hops out of her Honda after parking in a handicapped spot it is easy for others to suspect that nothing is wrong and that she simply wants to park close to the door. However, the handicap placard hanging from her rearview mirror offers very little information about her RBI that left her often unable to remember where she parked.
In areas such as an expert’s medical diagnosis the label should be specific to the symptoms and/or deficits. In 1994 the release of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) expanded the definition of autism and added the diagnosis of Asperger’s syndrome. The difficulty with the Asperger’s label is the fact that the majority of the diagnostic criteria are identical to autism disorder only with a reduction in severity. So, does this particular accumulation of criteria deserve a standalone label as a disorder?
The DSM-5, released in 2013 includes a number of significant changes in criteria and definitions. One that has sparked controversy is the removal of Asperger’s syndrome and pervasive developmental disorder – not otherwise specified (PDD-NOS) diagnoses as standalone diagnoses. Now, individuals who exhibit the criteria of these past disorders are to be re-diagnosed with autism spectrum disorder (ASD) using the DSM-5’s new severity level specifics. These severity levels identify the amount of support required by the individual in both social communication and restricted, repetitive behavior. This change has left many individuals and families questioning what the extraction of the previous disorders has in store.
The opponents of the DSM change have justifiable concern about what this will change in terms of insurance coverage, individualized education plans, reevaluation and accuracy of the DSM-5 change. This controversy is mainly due to the notion that individuals already diagnosed with autistic disorder may no longer qualify for state services. According to the American Speech-Language-Hearing Association there are 37 states that currently have insurance mandates for autism spectrum disorder. Although mandates vary between states, requirements generally consist of coverage for diagnosis and treatment of ASD in some form or fashion. The concerns of those lucky enough to reside in one of these 37 states are mostly to do with the amount of coverage offered for each level of severity. Individuals with an existing diagnosis of Asperger’s (for example) must be retested to determine where they reside on the new autism spectrum.
The concern about whether the DSM-5 changes could possibly affect an Individualized Education Plan (IEP) for those that must be re-diagnosed is justifiable. When taken into consideration that an IEP is a legally binding document that spells out exactly what special education services a child will receive and why, the transfer of a disorder label appears to conflict with an already established IEP. Each state has specific regulations for IEP’s however, DSM criteria is not always a determining factor for educational eligibility. For example, the Minnesota Department of Education specifies that “evaluation procedures must be administered so as: to yield accurate information on what the child knows and can do academically, developmentally, and functionally.” This manner in which to determine eligibility may incorporate DSM criteria provided by the parent but does not rely solely on it to determine educational eligibility of an IEP.
Parents, special education advocates, and a variety of others within the Asperger’s community signed over 9000 petitions in hopes of changing the APA’s decision to alter the manual. The changes to the DSM-5 do incorporate more stringent requirements in the number of criteria necessary for ASD diagnosis and have shown a small reduction in the number of diagnosis applied to individuals. However, results show that the majority of those who fail to meet the DSM-5 criteria for ASD will be most likely those previously diagnosed with PDD-NOS according to the DSM-IV. These individuals would likely meet the criteria for Social Communication Disorder, a new diagnosis in the DSM-5 (Comparing article).
The motives for such a drastic change in diagnostic labeling are clear. In 1999 the American Psychiatric Association (APA) began work on developing the DSM-5 in an effort to apply the strongest scientific evidence to definitions and diagnostic criteria. For example, the not otherwise specified (NOS) category was an ambiguous often used classification for a disorder that shared almost the same criteria as other neurodevelopmental disorders. A study conducted in 2012 identified significant variation in clinical diagnosis using the previous DSM-IV classifications (autistic disorder, pervasive developmental disorder-not otherwise specified, and Asperger’s disorder). Expert research clinicians at 12 university-based sites varied in their diagnosis of children who exhibited features found in all three classifications. This variation in diagnosis is confusing for the individual and their families The understanding and measurement of ASD in the current edition of the DSM offers a more refined and individualized means of clinical diagnosis by reducing the variability of labels that shared an all but identical set of diagnostic criteria.
Ultimately, the removal of Asperger’s and PDD-NOS is a way of simplifying the confusing diagnostic labels for mental health experts, educators, individuals, and the families of those who exhibit autistic features. ASD encompasses a number of deficits, impairments, and behavior patterns that are specific to the individual. ASD is now a more broad classification of a single disorder however; within this diagnosis individuals will be more thoroughly described by the specific severity levels. Change is rarely taken easily but this change should be welcomed, if for nothing else, the simplicity that it offers for all who are involved.