The Asperger's Association of New England [AANE], a nonprofit organization with more than 3,000 members, has written a letter to the APA committee in charge of revising autism diagnoses explaining that Asperger's should remain separate, said Dania Jekel, the association's executive director. The group is currently trying to mobilize other organizations to speak out and do what they can to see that the diagnosis remains in the DSM V.
"This is their identity, which is really being taken away," Jekel said. "If everybody's sort of lumped together, we're going to lose that."
On its website, AANE elaborates:
AS provides an identity to a large and growing group of people.
“Asperger Syndrome” has become an indispensible key to self-understanding and self-acceptance for a rapidly growing multitude of children, teens, and adults. The AS diagnosis allows them to grasp and accept their unique combination of strengths and challenges, to become effective self-advocates, and to develop more adaptive life strategies. In two short words, the AS diagnosis explains to people with AS why they struggle in life despite their considerable gifts. A host of adults have embraced this identity and found humor and beauty, compassion and courage in it. Removing Asperger’s from the DSM would cause a devastating loss to people with AS, who have built precious, hard-won identities around the term.
Having the AS nomenclature helps create invaluable community.
People with AS and their families tend to be marginalized in their communities. AS is the key to finding face-to-face and/or online communities of similar people—people who can really understand each other’s experiences, and can support each other on their journeys. The term “Asperger Syndrome” is what allows them to connect to others like them.
