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Redefining Asperger's: With a Diagnosis, Often Comes An Identity

Erika Beras
90.5 WESA

When the new Diagnostic and Statistical Manual is published next month, there will be several changes to psychiatric diagnoses.

Many of these changes are controversial — especially the one made to autism spectrum disorders. 

Phil Garrow has Asperger's syndrome. It's what’s written on his medical chart. He says the social struggles that come with the diagnosis is why he hasn’t been able to hold down engineering jobs despite his proficiency in the field.

"I have now been carrying this idea of what are you, well I have Asperger's syndrome, and I have been carrying this around for more than a decade," he said. "Well, you know, I’m gonna keep saying I’m an Aspie. That’s who just who I am, what I am."

But after May, the diagnosis that has made so much sense out of what he thought were just quirks will disappear.

Asperger's syndrome as a medical diagnosis won’t exist anymore, and the term others with his diagnosis use to casually define themselves — Aspie — will just be colloquial. Garrow will be lumped under the umbrella of autism spectrum disorders.

"As a group, we really felt that the core of autism spectrum disorders involved some sort of social deficit and repetitive interests but not either or but both of those things," said Catherine Lord, who runs the autism center at NY Presbyterian–Cornell.

Lord was a part of the work group that revised the neural-developmental disorders chapter in the DSM 5. She also worked on the last version of the book, the DSM 4.

"I can certainly understand that there are people that want to identify – want to have a group identity if they have been excluded from other groups in their lives they can say, 'I have a group I can belong to, I am an Aspie.'"

"If you just take the definition of Asperger's as we wrote it in DSM 4, and I was there ... it just doesn’t work," she said. 

The Bible of Psychiatry

The DSM stands for the Diagnostic and Statistical Manual. Released by the American Psychiatric Association, it is considered the Bible of psychiatry.

It’s the book used by psychiatrists and psychologists, social workers and insurance companies, courts and school districts to diagnose and classify mental health diagnosis. This is its fifth version and the first revision in 17 years. Revising it is a long and complicated process.

When the first book was published in 1952, autism spectrum disorders were listed as a subsection of schizophrenia. And through the various editions, the definition has changed. It wasn’t until the last DSM, published in the 1990s, that Asperger's was its own category.

Lord said the autism definition itself has fluctuated.

"Originally, DSM 3 was really written to describe really severe cases, and DSM 3 Revised tried to broaden it, and DSM 4 tried to narrow it but ended up still describing young children or school age children," she said. 

Martin Lubetsky is a child and adolescent psychiatrist at the Center for Autism and Developmental Disorders at Western Psychiatric Institute and Clinic. He said the changes affect his work, but it's also just part of the field.

"I’ve seen the categories change over the years, and the hope is that the refinement can be clinically beneficial," he said.

Autism is a neural developmental disorder characterized by impaired social interaction and communication and restricted and repetitive behavior. It’s a spectrum disorder, meaning one can have mild or severe autism. It's unknown what causes it, and there is no cure.

The prevalence of autism has drastically increased over the last couple decades to the point that a recent report from the Centers for Disease Control and Prevention says one in 50 school-aged children have an autism spectrum disorder.

You can have Asperger's or pervasive developmental disorder - not otherwise specified (PPD-NOS), both different autism diagnoses that will be folded into autism spectrum disorders.

Lord said this new definition will be less nebulous. 

Living With Asperger's

In the autism population, those with Asperger's represent a small percentage, but because they tend to be high functioning, it is a vocal one.

For Caitlin Freeman, Phil Garrow’s girlfriend, when she got her Asperger's diagnosis as an adult, it became a defining aspect of her identity. But she said it's not the only defining aspect. For others she knows, that’s not so much the case.

"Do I believe that the term Asperger's will persist for the rest of my life? Yes there will still be people using the term. It just takes a long time for any term to get out of people’s consciousness."

"I can certainly understand that there are people that want to identify – want to have a group identity if they have been excluded from other groups in their lives they can say, 'I have a group I can belong to, I am an Aspie,'" she said. "Having that to self-identify with is very powerful for a lot of people."

Freeman and Garrow compare this shift to a geopolitical shift – someone from Yugoslavia wouldn’t stop calling themselves a Yugi because there country is gone for example. And closer to the DSM, although it's been years since bipolar disorder replaced manic depression in the DSM, it's still used in common language.

"I’m nearly 50 years old," Garrow said. "Do I believe that the term Asperger's will persist for the rest of my life? Yes there will still be people using the term. It just takes a long time for any term to get out of people’s consciousness."

Luciana Randall, the director of the advocacy group Autism Connection of Pennsylvania, worries that this change might affect younger people currently diagnosed with Asperger's syndrome.

"It's similar, but these parents tend to think that they fought every step of the way," she said. "And if they fought to promote their child’s personality and skill level and abilities, they are doing this in school and scouting and church, synagogue, temple, whenever they are trying to break ground for their child and explain who they are it helps to have that book and article and explain this is Asperger's."

She said so many people with Asperger's cling to that identity of high intelligence and high skill levels. And that in some ways, even among those with Asperger's, there is a stigma to saying they have autism.

"Really a lot of this is sort of speculation because we haven’t had people diagnosed under the DSM 5 yet," she said. 

Autism advocates worry that with this new definition, there may be changes in government funding or health insurance benefits.

Ellen Frank, a professor of psychiatry and psychology at the University of Pittsburgh, worked on the DSM. She said that policy groups who worked on the DSM looked at the public health implications of these changes. She said there wasn’t substantial evidence to suggest that by changing the name anyone would be denied services. 

"Rather, the opposite might be true," she said. "Autism is considered a very serious condition, the evidence suggested that children who no longer would get the Asperger's disorder might fare quite well under this new label of milder form of autism."

Catherine Lord, of the autism center at NY Presbyterian–Cornell, added that in this new edition of the DSM, what autism means will be clearer.

"If you really adhere to the way Asperger's is described in DSM 4, almost no one has it," she said. "In the formal definition you can't have Asperger's and have autism. If you have Asperger's you stop right there." 

Garrow said as far as he is concerned, he will still be an Aspie.

"If they are going to change it in some book or another," he said, "I’m probably going to say I have Asperger's syndrome no matter what the book says."

Update: An earlier version of this story included an incorrect title of the Diagnostic and Statistical Manual. The story has been corrected.

Erika Beras (she/her) is a reporter and host for NPR's Planet Money podcast.
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