From ABC news-By KATIE MOISSE May 25, 2011
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
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
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.”