Eileen Parker was 41 years old when she discovered her quirky, misunderstood behavior had a name: Asperger's. The syndrome, which is marked by impaired social interaction and sensory overload, joins other neurological disorders on the autism spectrum. And for Parker, the label came as a relief.
"It opened up my world," said Parker, who is now 45. "Having been on the outside, I all of sudden found I was on the inside with millions of other people."
Parker said the Asperger's diagnosis, which is used interchangeably with high-functioning autism, made it easier for her to get along with others -- even her husband and their four kids.
"They could finally understand why I was a certain way. They said, 'Oh, that's why you're like that.'"
The American Psychiatric Association formalized the diagnosis of Asperger's in 1994, 50 years after it was first described by Austrian pediatrician Hans Asperger. But the association plans to remove the term "Asperger's" from its new diagnostic manual, set for release in 2013 -- a decision that has sparked criticism from advocacy groups.
"When the term 'Asperger's' started to get used, it was a tremendous relief for families of children and adults with the syndrome. They finally had a name for what was going on; they could finally understand what the struggle in their lives was about," said Dania Jekel, executive director of the Asperger's Association of New England. "My worry is that we'll go back 16 years to a time when folks with Asperger's syndrome will not be recognized."
But members of the American Psychiatric Association's Neurodevelopment Disorders Workgroup, the group spearheading the change, said removing the term "Asperger's" from its manual and instead refering to it as an autism spectrum disorder will help focus the diagnosis on an individual's special skills and needs at that moment in time.
"The Asperger's distinction is based on early language delay, but many people come in as adults and have difficulty reporting this reliably," said Francesca Happe, professor of cognitive neuroscience at the Institute of Psychiatry in London, and a member of the workgroup."We have known for years that autism is a spectrum, which is enormously heterogeneous. ... There is no good basis to distinguish Asperger's from high-functioning autism. The distinction doesn't make scientific sense."
The term "high-functioning" refers to language and intellectual ability -- skills that set Asperger's apart from other disorders on the spectrum. But Jekel worries that removing the term "Asperger's" might open the door for misinterpreting it as just a mild form of autism.
"For many, Asperger's is not mild," she said. "If you have an IQ that's fairly high and you're verbal, people expect you to be like everyone else and get along in the world. But this is something that really can be very, very difficult for people to live with."
In response to an invitation for public comment on the proposed change, Jekel asked that "Asperger's" continue to be used as a descriptive word for a specific region of the spectrum.
"My hope is to have a name not only for Asperger's but for other parts of the spectrum, too," she said. "I think we're lucky to already have a name, and I'd like to see that continued so that families and educators can continue to use this word."
Happe said people are free to continue using the word as a descriptor, acknowledging that it has raised awareness that a person can be on the spectrum of autism disorders and have higher functions.
"When someone uses the term, I know what they mean," she said. "It's a sort of an exemplar-based category."
'Asperger's' Label Essential to Services
For Phyllis Anderson, the term "Asperger's" is a ticket to obtaining essential services for her 15-year-old son, Garrett.
"I need the label to get some sort of response from the administrators," said Anderson, who lives in Dallas. "If I can tell them my son has this label, they're a lot quicker to cover their backs and provide for my son. So that label does carry weight in the school system."
For Garrett, who was diagnosed in second grade, the Asperger's label is bittersweet. While helping him to understand why he's different, it makes it harder for him to fit in.
"I know my son has struggled because he just wants to be normal," Anderson said. "But I think it's good to know and understand how you're wired."
For Parker, whose diagnosis came much later in life, the label had a "profound effect." It helped her find life-changing therapies, a new community of people with similar experiences, and even a new calling. She now runs a company that makes weighted blankets, which help people with sensory processing disorders, a symptom of Asperger's, stay calm and sleep better.
"I always knew I was different but didn't know why," Parker said. "I think I started to accept myself more."