Asperger's Officially Placed Inside Autism Spectrum
Asperger's syndrome is really just a form of autism and does not merit a separate diagnosis, according to a panel of researchers assembled by the American Psychiatric Association.
Even though many researchers already refer to Asperger's as high-functioning autism, it hasn't been listed under the autism category in the official diagnostic guide of mental disorders, called the Diagnostic and Statistical Manual, or DSM. The DSM serves as a guide for mental health professionals and government agencies.
But a new draft fifth edition released Wednesday moves Asperger's officially into the autism category, provoking a wide range of responses among people with Asperger's — some of whom say they do not want to be labeled as autistic.
Redefining A Disorder
Instead of including a diagnostic category for Asperger's, the DSM 5 draft includes traits associated with Asperger's, such as difficulty with social interactions and limited, repetitive behaviors, in a broad category called autism spectrum disorder.
"The intent is to try to make the diagnosis of autism clearer and to better reflect the science," says Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center. Lord is part of the group that decided to consolidate autism-related categories, including Asperger's.
But the change is going to be hard for some people with Asperger's, says Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger's From the Inside Out. "I personally am probably going to have a very hard time calling myself autistic," says Carley, who was diagnosed with Asperger's years ago.
Many people with Asperger's take pride in a diagnosis that probably describes some major historical figures, including Albert Einstein and Thomas Edison, Carley says. Under the new system, those people would represent just one extreme of a spectrum. On the other extreme is "somebody who might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow," he says.
Yet Carley says he agrees with the decision to fold Asperger's into the autism spectrum disorder diagnosis.
Blurred Lines From The Start
Since 1994, when the fourth edition of the DSM added the Asperger's category, health care professionals have struggled to find a way to separate Asperger's from autism, Carley says. "Every time they've tried to draw that line it's been proven false in practice," he says.
Right now, the diagnosis often hinges on a person's language skills. But that's pretty subjective and can change as a child grows up, researchers say. "The categories are just not used by clinicians in a reliable fashion," Lord says. A single category for autism spectrum disorder will let clinicians stop agonizing over which diagnostic category to put someone in and focus on their specific difficulties with communication, or social interaction, or information processing, he says.
The change makes a lot of sense, says Roy Richard Grinker, an anthropologist at George Washington University who has studied autism in various cultures. He is also the author of Unstrange Minds, a book about his daughter, who has autism. "As somebody who has a child with a diagnosis of autism, I want to be able to turn to the official criteria and see a description that sounds like my child," Grinker says. "Right now my child sounds like three or four different disorders."
When his daughter was 4, she met the criteria for classic autism, Grinker says. Now that she's in high school, she would probably be considered Asperger's or maybe just a quirky kid, he says.
Eliminating the Asperger's diagnosis won't mean that people in that category will lose access to services, Grinker says. That's because "almost anybody with an Asperger's diagnosis also could qualify for what is called autistic disorder," he says, adding that the change could make it easier for some parents to get help for a child with Asperger's.
Right now, states including California provide services to children with autism but not those with Asperger's, Grinker says. "So removing Asperger's really removes what is a false barrier to parents getting care for their kids."
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STEVE INSKEEP, host:
Now, here's another change being introduced today. The new Manual of Psychiatric Disorders does not include Aspergers disorder. That diagnosis, recognized since 1994, goes away, as do others related to autism. They will now be considered part of a broad category know as Autism Spectrum Disorder.
NPRs Jon Hamilton explains why.
JON HAMILTON: The differences between Aspergers and autism have always been subtle. Both involve restricted, repetitive behaviors and difficulties with social interaction. Aspergers is often considered a mild form of autism, but some people diagnosed with Aspergers actually have more difficulty functioning in society than some people labeled autistic. And who gets which label can be pretty arbitrary. So for health professionals, a single broad category makes sense. But for a lot of people with Aspergers, the proposed change is upsetting.
Mr. MICHAEL JOHN CARLEY (Global & Regional Asperger's Syndrome Partnership): I personally am probably going to have a hard time calling myself autistic.
HAMILTON: Michael John Carley runs the Global and Regional Asperger's Syndrome Partnership in New York. He says many people with Asperger's take pride in a diagnosis associated with some big names.
Mr. CARLEY: Albert Einstein, Thomas Edison, Thomas Jefferson, Emily Dickinson.
HAMILTON: Carley says under the new system, these geniuses would represent just one extreme on a spectrum.
Mr. CARLEY: And yet on the vast other extreme, somebody who might have to wear adult diapers and maybe a head restraining device. This is very hard for us to swallow, that these two extremes might indeed just have different variations of the same condition.
HAMILTON: But Carley says he realizes that there is strong scientific evidence supporting that idea. And he says efforts to separate Asperger's and autism just haven't worked.
Mr. CARLEY: The problem is that the clinical world has for so long attempted to draw a line in the sand where autism becomes Asperger's and vice versa. And every time they've tried to draw that line it's been proven false in practice.
HAMILTON: Right now, the diagnosis often hinges on language and communications skills in early childhood. But those are pretty subjective and can change dramatically as a child grows up. Catherine Lord from the University of Michigan is part of the group that decided to combine all the autism-related diagnoses into one. She says the current system is a mess.
Professor CATHERINE LORD (University of Michigan): The categories are just not used by clinicians in a reliable fashion.
HAMILTON: Lord says the change is not an effort to influence how people with Asperger's or autism identify themselves.
Prof. LORD: The intent is to try to make the diagnosis of autism - what we're calling Autism Spectrum Disorders - clearer and to better reflect the science and also the knowledge of how people use these terms.
HAMILTON: So instead of agonizing over autism versus Asperger's, clinicians can focus on each person's specific difficulties, with communication or social interaction or information processing.
To experts in the field, that sounds like a good idea. Roy Richard Grinker is an anthropologist at George Washington University. He has studied autism in other cultures and in his own family.
Professor ROY RICHARD GRINKER (George Washington University): As somebody who has a child with a diagnosis of autism, I want to be able to turn to the official criteria and see a description that sounds like my child. Right now, my child sounds like three or four different disorders.
HAMILTON: Grinker says when his daughter was three, she met the criteria for classic autism. Now that she's 18, she would probably be considered Asperger's, or maybe just a quirky kid. At the moment, different diagnostic labels may qualify people for different services. But Grinker says losing the Asperger's diagnosis does not mean families will lose services they need.
Prof. GRINKER: Almost anybody with an Asperger's diagnosis also could qualify for what is called autistic disorder.
HAMILTON: And he says the change could actually make it easier for parents who are struggling to get help for a child with Asperger's.
Prof. GRINKER: They may be denied services from certain regional or state centers because their child doesn't have a diagnosis of autism. I know this is the case in California. And so removing Asperger's really removes what is a false barrier to parents getting care for their kids.
HAMILTON: The American Psychiatric Association plans to spend the next few months reviewing comments on the proposed changes. The new Diagnostic and Statistical Manual is due out in 2013.
Jon Hamilton, NPR News. Transcript provided by NPR, Copyright National Public Radio.
