DSM-5: What's in a name? Codifying mental illness

Diagnoses are a combination of social conditions and medical symptoms

A new edition of the Diagnostic and Statistical Manual eliminates some mental disorders while including new criteria for diagnosing other conditions. Does it actually matter how we name illnesses?

When the hugely influential Diagnostic and Statistical Manual (DSM) came out this year, it sharply divided medical opinion.

The DSM, published by the American Psychiatric Association, is a bible for those working in the mental health fields, codifying recognised psychiatric disorders and listing symptoms of each.

The book, which has been around since 1952, is continually revised as medical opinions change and research advances. For instance, in this edition, the entry for Attention Deficit Hyperactivity Disorder is no longer classified as one that ends in childhood.

Providing an official diagnosis has several practical advantages: once a disorder is codified in the medical literature, it opens up important doors for doctors and patients.

Ian Hacking, a Canadian philosopher, says the manual has wide impact.

"If you are a researcher and want to publish a paper," he says, "if you are applying for money either from a private or public foundation, you have to have a DSM code."

For American patients, a DSM code helps to access insurance needed for medical care.

But being given a diagnosis does more than reduce medical bureaucracy. It can also change how a person feels about him or herself.

"It might completely transform your identity, the way you think of yourself," says Annemarie Jutel, author of Putting a Name to It: Diagnosis in Contemporary Society.

A proper diagnosis, she says, doesn't change the way the disease feels or manifests. A person will still demonstrate social awkwardness, an affinity for flapping arms, and a hyperfocus on certain topics before and after an autism diagnosis, after all. But giving those symptoms a name, and connecting them as part of a single disorder, has huge importance.

"Nothing has changed in you biophysically, but your whole sense of yourself might shift," Jutel says.

Indeed, though the creation of a diagnosis may be decided by a core group of doctors and codified in books like the DSM, they become something entirely different when introduced to the public.

It's a phenomenon the philosopher Hacking calls the looping effect - being classified as something changes your perception of yourself. That, in turn, can change the public perception of the disorder.

"The people who are so classified may take it upon themselves to change the way in which the classification is thought of, and what comes under the classification," he says.

He cites the neurodiversity movement, which champions the idea that autism is not a disorder so much as another way of thinking, and who argue that society could benefit by adapting to people with autism, not the other way around.

"Here are people classified as a certain way fighting back against the classification and wanting to name it for themselves," he says.

The biggest changes for many in DSM-5 was the news that disorders related to autism that previously had their own category - such as Autistic Disorder, Asperger's Disorder, and Pervasive Developmental Disorder Not Otherwise Specified - will now all be classified as one diagnosis, Autism Spectrum Disorder.

This essentially eliminates Asperger's as its own clinical condition - but the chance that the idea of Asperger's, or those who call themselves Aspies, will disappear is slim, says Hacking.

That's because since the concept was introduced in an edition of the DSM-4, it's take on a life of its own. The term has been adopted by the neurodiversity movement, and co-opted by those who embrace the diagnosis.

Naming a disorder allows those dealing with it to organise and advocate

It's another example of how these diagnoses, while based on real symptoms and maladies, are also heavily influenced by people's whims and decisions.

"There's no doubt these things are real, but how we package them up... is so contingent on power relationships and the things that make us anxious as a society," says Jutel, a professor of Nursing, Midwifery and Health at the University of Wellington in New Zealand.

For instance, homosexuality was included in the DSM until 1973, and only removed after a sustained campaign by the burgeoning gay-rights movement.

The removal of the 81 words on homosexuality from the book reflected the changing social attitudes while also acting as a catalyst for further social change.

Its exclusion gave gay-rights advocates more ammunition in the fight for equal rights.

The "power relationships" involved in the packaging of these conditions has some concerned about giving too many things an official diagnosis, turning what they see as normal human emotions into a type of disorder.

The DSM-5, for instance, removes the bereavement exclusion in cases of depression. Previously, the death of a loved one was taken into account when diagnosing depression. Now doctors are told that two weeks after the loss, it's possible to distinguish depression from normal grief.

But Christopher Lane, author of Shyness: How Normal Behavior Became a Sickness, says: "Mourning and depression share a vast number of symptoms. It's really hard at 14 days to distinguish one from another."

To Lane, the danger of giving disorders a name is the threat of inadvertently creating a disorder where none exists.

"With psychiatric conditions, the boundaries between health and wellness are not so clear, and they're endlessly shifting," he says.

Doctor Lisa Sanders writes a column in the New York Times where readers are presented with symptoms and must guess the diagnosis.

She says the power of having a name for your maladies - both physical and mental - has become clear to her.

"My feeling a while ago was, buck up and figure out how to treat your symptoms: a diagnosis is just a word. It doesn't change you," says Sanders, author of Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis.

"It turns out it does."

The question then, is whether that change is for better or worse.