It is difficult to think of another neurological diagnosis that has captured the public imagination more powerfully than Asperger’s syndrome. In the 17 years since Asperger’s joined the parade of neurologically based eccentricities, it has carried the flag for idiosyncrasies of human connection and imparted to the crowds a greater understanding of difference. Recently the spotlight has been on James Durbin—the unlikely rock star of American Idol, just voted off after reaching fourth place—and Zev Glassenberg of The Amazing Race. Both contestants acknowledged they have Asperger’s, an autism-spectrum condition. Popular culture, perhaps most notably the NBC series Parenthood, has taken characters and individuals with Asperger’s who would otherwise be on the periphery and placed them at the center.
Nevertheless, the diagnosis of Asperger’s syndrome seems about to be lost, a casualty of the struggle to clarify how we think about autism. Under proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM), the diagnostic encyclopedia of American psychiatry, it appears the term Asperger’s will be discarded—a change unwelcome in much of the Asperger’s community. This is happening even as a study published in the American Journal of Psychiatry using new methodology suggests the prevalence of autism in developed nations may be far higher than previously thought, suggesting that the impact of the DSM changes will be more widely felt than we can currently know. Meanwhile, a parallel debate, also with profound implications for diagnosis and treatment, is about how to conceptualize and organize the perplexing variety of ways that autism presents.
In the current edition of the DSM, Asperger’s is one of several subgroups of autism identified by separate labels. These are poorly defined and have generated confusion and subjectivity around diagnosis. In the forthcoming DSM edition, scheduled to be published in 2013, these subcategories will probably be discarded, and the single diagnostic label of Autistic Spectrum Disorder will serve for all. Its manifestations will be categorized by two numerical scales of severity that aim to locate each individual on the continuum. (The DSM committee invites public comment on its proposals until June 15.)
Many experts and advocates have expressed skepticism, arguing that these numerical scales cannot capture the complexities of autism. Some say the diagnostic dilemma would be better resolved by more precisely defining Asperger’s than eliminating it. Nevertheless, the DSM changes appear set to proceed. The best hope for the survival of the Asperger’s brand is that the narrative of the DSM will retain a shorthand labeling system for regions of the autism spectrum associated with relatively well-defined needs and interventions. Asperger’s inhabits one such region. Classic or non-speaking autism probably inhabits another.
Why is the Asperger’s label worth retaining? At the Asperger’s Association of New England (based in Watertown, Massachusetts), the largest and most established U.S. organization supporting people with Asperger’s, we see daily how powerfully and positively this diagnosis influences the lives of those with the condition. Before 1994, when Asperger’s syndrome was first included in the DSM, they wandered a diagnostic wasteland, sometimes picking up inappropriate labels—bipolar disorder, schizophrenia, OCD, atypical ADHD—that did little to clarify or address their needs. The Asperger’s diagnosis, in contrast, has provided meaningful identity and generated a tremendous international self-help movement. As Temple Grandin, a professor and a prominent autistic American, has said, the size and voice of the Asperger’s community is reason enough to leave the diagnosis in place. A corresponding profusion of literature and research has facilitated leaps in understanding among individuals, families, educators, and clinicians. A simple qualitative scale cannot serve this community and culture.
The effect on the continuity of service provision is a major concern.
Moreover, the DSM changes risk an erosion of the autism spectrum at the higher-functioning end. Tony Attwood, a leading Asperger’s expert, has expressed concern that dropping the label will dissuade people from being evaluated. Some aspects of the proposed criteria can be unclear in adults, who might be “undiagnosed” under the numerical cutoffs. Neuropsychological testing instruments can be insensitive to less-pronounced autism, again making diagnosis less likely.
The effect on the continuity of service provision is a major concern. Proponents of the DSM change argue that in the small number of states where students with Asperger’s syndrome are not entitled to special-education services, dismantling the subcategories of autism may broaden access. The move, however, could have the opposite effect nationwide. Higher functioning students are likely to be perceived as inhabiting the “mild” end of the autism spectrum (though there is nothing mild about their condition) and less deserving of supports. Conversely, students with the diagnosis formerly known as Asperger’s could be placed in a catchall autism classroom that will fail its students across the board. The change is likely to lower expectations for many academically capable students.
Retaining the current diagnosis is not about distancing Asperger’s from other forms of autism. This is about classifying a particular subgroup in a way that demonstrably adds value. That Asperger’s is a form of autism does not mean we should know it only as autism. Spanish and Italian are closely related linguistically, yet it isn’t helpful to call Italian Spanish.
Until researchers can bring greater refinement to categorizing autistic spectrum conditions there will be frustrations around diagnosis. Entirely replacing this diagnostic label with a set of numbers threatens the connections that have proven so valuable both within the Asperger’s community and with the public at large.
This piece represents the position of the Asperger’s Association of New England, the largest and most established support, information, and advocacy organization in the U.S. dedicated to Asperger’s syndrome and related conditions.
Lucy Berrington is on the board of the Asperger’s Association of New England.