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.
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 [emphasis added].
Often when Jeff Sell watches police videos of a suspect talk about a horrific crime with the same warmth as a toy robot, avoid eye contact, offer precise detailed descriptions - perhaps even a confession - and appear oblivious to the harm caused, he doesn't see a monster.
What Sell sees is Asperger's.
"That is the textbook definition," said Sell, an attorney and vice president of public policy for the Autism Society of America.
A definition that fits a small but growing number of criminal defendants, such as James Lee Troutman, the 24-year-old man accused of raping and murdering his 9-year-old neighbor Skyler Kauffman earlier this month at the Souderton Gardens apartment complex where they lived.
The so-called Asperger's defense is cropping up in legal cases nationally, as lawyers argue that people with the disorder may be incapable of completely understanding the ramifications of their actions or expressing remorse in a socially acceptable way.
Statistically, people with Asperger's are more likely to be a crime victim than perpetrator, according to advocates for people with autism.
A 2007 Autism Society of America survey of more than 1,500 individuals on the autism spectrum and their caregivers found that 35 percent had been the victim of a crime and, of that 35 percent, 3 percent reported being coerced to commit or participate in a crime.
People with Asperger's syndrome accounted for fewer than 5 percent of U.S. prisoners in maximum security psychiatric wards and estimates suggest only about 2 percent of affected individuals exhibit violent or otherwise problematic behaviors, according to a 2009 appearing in the journal Clinical Psychiatry News.