Asperger's community reacts to loss of diagnosis

For me, and many like me, the diagnosis is much more than a label. It can be a source of pride; a badge of honour for surviving in a world that, for us, seems chaotic, overwhelming and downright scary. It can also be a part of our identity. When I meet a fellow Aspie, I feel a sense of fraternity with them. This person, unlike the other 99% of people, sees the world in the same way as me. 

- Joshua Muggleton, writing in The Guardian UK

Laser-focus. Divergent thinking. Lofty achievements in the arts, sciences, and technology. For the past seventeen years, the Asperger's syndrome (AS) community has been building a unified front, a positive identity for its members. Now some worry that they may be about to lose the very thing that binds them together—their diagnosis.

The latest version of the Diagnostic and Statistical Manual (DSM-5) released on May 18 eliminated Asperger's syndrome as a unique psychiatric condition. Instead, the syndrome will be rolled into the umbrella category of Autistic Spectrum Disorders, with a numerical scale (Level 1, 2, or 3) used to rate symptom severity.

This means that many people with AS—particularly schoolchildren who are re-evaluated every three years—will eventually shed the Asperger's label. Many advocates worry that these changes could lead to a loss of legal protections, such as educational and work accommodations. And some feel it robs the AS community of an important source of identity.

Asperger's syndrome is a form of autism that primarily impacts social functioning and behavior. The diagnosis, which was officially added to the handbooks in 1994, greatly increased public awareness—and eventually acceptance—of the condition. Previously, people with Asperger's often found themselves socially and educationally marginalized or misdiagnosed with anxiety, mood, and even psychotic disorders.

"The Asperger’s diagnosis, in contrast, has provided meaningful identity and generated a tremendous international self-help movement," board member Lucy Berrington wrote in a 2011 position paper for the Asperger's Association of New England (which opposed elimination of the diagnosis).

Proponents of the changes say they were necessary to bring practice in line with research and to ensure that diagnoses are specific, valid, and applicable to every person on the autism spectrum. However, several high profile scientists, including Thomas Insel of the National Institutes for Mental Health, have spoken out against the DSM-5's approach, implying it's based on soft science. "Patients with mental disorders deserve better," Insel wrote in a recent post on the NIMH website.

The advocacy organization Autism Speaks (one of several consulted by the DSM-5 work group), has been quick to reassure the Asperger's community that a loss of legal protections is unlikely. People previously diagnosed with Asperger's disorder should continue to receive school and work accommodations and insurance coverage under their new label. According to the DSM-5 FAQ at austimspeaks.org, "If you have a diagnosis for [autism spectrum disorder], you have a diagnosis of ASD for your life."

Even when people with Asperger's continue to receive needed services and support, some advocates worry that their unique needs will be overlooked if they're merged into the larger autism community. For example, a child with Asperger's might be placed in a self-contained autism classroom, though she doesn't have the cognitive and language deficits typical of classic autism. "That Asperger’s is a form of autism does not mean we should know it only as autism," Berringer wrote. "Spanish and Italian are closely related linguistically, yet it isn’t helpful to call Italian Spanish."

Other people with Asperger's syndrome have spoken out welcoming the change. After examining the research and weighing it against his personal experience, Muggleton concluded that the decision to merge Asperger's into the larger autism spectrum made sense. Despite some lingering reservations about the legal implications, he felt that joining the two communities might have a positive impact.

"I don't see this as an end to the camaraderie I have with my fellow Aspies," he said. "Instead, I feel we are opening up the fraternity of Aspie to our autistic friends."

How do you feel about the removal of Asperger's syndrome from the DSM-5? What impacts have you seen?