At a whopping 947 pages, the DSM is heavier than ever before, and in more ways than one.
The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders – the American Psychiatric Association’s newly revised and controversial list of recognized mental illnesses – was published this May after 14 years in the making.
Sixty-one years and five editions since publication of the first pamphlet-sized manual, the long-awaited updated edition hurdles its heavy load onto the shelves of doctors, therapists, lawyers, judges, insurance companies and educators all over the country. The new manual will influence those among us who are by-the-book sick in the head, according to the ever-evolving standards of the medical orthodoxy. It will also affect who qualifies for counseling, prescription drugs, special education and treatment courts, among other programs, and who makes the cut for insurance coverage or public assistance to pay for treatment.
Though the changes from the DSM-IV to the DSM-5 are innumerable, the overall number of disorders has not changed, but new names, new disorder subtypes and new symptoms crowd the many pages of the reformatted and reorganized book. In an era when medical costs are skyrocketing, so too are the subtypes of mental disorders considered worthy of health care dollars.
According to psychiatrist and Duke University professor emeritus Dr. Allen Frances, we are facing “diagnostic inflation.” What once seemed like regular variations in behavior and personality now seem to qualify many of as having mental disorders.
“More severe problems in psychology are being neglected, less severe problems in psychology are being over-diagnosed and over-treated,” Frances said. “Medicine is going to the wrong people.”
Have you ever felt a little drowsy after going a day without coffee? Page 506, Diagnosis No. 292.0: Caffeine Withdrawal Disorder. Do you pick at your skin when you’re stressed? Page 254, Diagnosis No. 698.4: Excoriation Disorder. Have you experienced pain that you just can’t find the words to describe? Pain that your doctor can’t identify or understand? Well then it isn’t real. Page 311, Diagnosis No. 300.82: Somatic Symptom Disorder. Do you sometimes grieve the recent or distant loss of a loved one? Page 160, Diagnosis No. 296.21: Major Depressive Disorder. Do you enjoy multiple servings at a delicious meal until you’re slightly uncomfortable? Have you done so at least 12 times in three months? Page 350, Diagnosis No. 307.51: Binge Eating Disorder. Are you gay or lesbian? Homosexuality was listed as a disorder until 1973, (and even then it was replaced with Sexual Orientation Disturbance) and is essentially the only disorder removed from the DSM to date.
These are just a few of the ways the DSM tells us, essentially, that most of us aren’t normal. For a document that appears to apply to a vast majority of the population, diagnosed or undiagnosed, the business of how certain mental health conditions are deemed worthy of being classified as disorders is surprisingly secret, even to mental health experts who refer to the book daily.
“The DSM-5 has been a bit of a mystery to those of us not a part of the process,” said Colorado College psychology professor Kristi Erdal.
Even Frances, the man who led the task force for the last edition, DSM-IV, published in 1994, was out of the loop this time around. For the first time in the history of the DSM, each task force member had to sign a nondisclosure agreement to work on the DSM-5. After expressing serious concerns about the overall lack of openness and transparency of the DSM-5 Task Force, but to no effect, Frances refused to take part in the process.
“It’s a terrible way to develop a manual,” he said. “Small groups of experts got to determine what made it in, and experts always tend to expand their particular area.”
Over the past few years, Frances has become the best known critic of the latest edition and the classification of disorders. In 2010, two years after he removed himself from the development of the DSM-5, he started a weekly blog for Psychology Today called “DSM-5 in Distress” and wrote a few books on the topic, including one titled Saving Normal.
So, is the DSM too problematic for its own — or our own — good?
Frances says yes. In a Huffington Post blog entry on May 16, he wrote, “My recommendation for clinicians is simple. Don’t use DSM-5 — there is nothing official about it, nothing especially helpful in it.”
Colorado College’s Erdal takes a measured position. “I will defend the DSM in the sense that there needs to be a document,” she said. “It’s essential. A document is essential.”
Consulting the DSM, even just knowing it’s there, could help a person suffering with mental illness understand that he or she is not suffering alone. Perhaps an even bigger benefit is that if a disorder is listed in the latest edition, medication and treatment will be covered by insurance, usually with no questions asked.
Kathy Brandt of Colorado Springs is a testament to the benefits. As a college junior, Brandt’s son Max Maddox began experiencing severe psychotic episodes. Upon his first hospitalization, doctors were able to definitively diagnose him with bipolar I disorder.
“I’m sure that that diagnosis came from the definition in the DSM,” Brandt said. “In that way, the DSM was right on. His symptoms were in line.”
Immediate recognition of the disorder got Maddox the help he needed at first. But, after he was hospitalized for psychotic episodes three times in three months, Brandt got a disturbing call.
“A social worker on the unit says, ‘I am so sorry, Max is never going to get better. He has schizoaffective disorder,’” Brandt said.
According to the social worker, Maddox was psychotic for at least two weeks without experiencing a manic episode, meeting the DSM’s definition of schizoaffective disorder. Brandt thought to herself, who wouldn’t be experiencing these symptoms while locked away in a hospital for so long? What’s more, she felt much more confident and comfortable with the bipolar diagnosis. It fit, and it meant not having to “give up.”
“So the first thing I did was look at the DSM,” Brandt said.
She discovered two things: first, though schizoaffective disorder encompassed the problems her son was facing in the hospital, he didn’t have it. Second, and most importantly, the DSM is not the be-all, end-all of diagnosing and understanding mental illness.
“I began to realize that these illnesses are very individual,” Brandt said. “They treat people based on the guidelines in the DSM rather than looking at the individual. Patients are often ignored in the process somehow — what they feel, what they say, what kinds of meds are working and aren’t. They aren’t listened to.”
Of course, this sort of disregard for patients could be specific to a particular hospital or doctor. Still, it’s also a consequence of a large, no-room-for-notes manual.
When speaking of the problems of over-diagnosing and over-medicating, Frances’ advice is this: “Parents should be very cautious about accepting a diagnosis for their child.” It should be a red flag when the credibility of a diagnosis must be left up to the better judgment of patients, friends and family.
Looking back, Brandt cringes to think what might have happened had they accepted her son’s second diagnosis — a label she considered “totally destructive.” She knew Maddox was a talented, sensitive, creative person and she was not going to accept a misdiagnosis or recommendation to send him to live out his days in a treatment facility.
In hopes of sharing their experience with diagnoses, medication and the mental health system, and, in a way, normalizing mental illness, Brandt and Maddox co-authored and published a memoir in May called Walks on the Margins: A Story of Bipolar Illness. The book explores something that the DSM cannot — the infinite possibilities of variation when it comes to diagnosing and treating individuals, what Brandt calls the “human aspect.”
Despite the pitfalls, in Maddox’s case the DSM was invaluable in the sense that it helped identify his disorder and make affordable the necessary treatment.
Other patients whose problems haven’t been so widely recognized aren’t so lucky. For patients suffering from disorders and symptoms yet to be classified in the DSM, treatment can be nearly impossible to find and, even if found, insurance will not cover the expenses. The total number of disorders has not increased in the latest edition, but subtypes abound. For these reasons, it has become harder than ever for a disorder to make it into the DSM. According to Frances, 92 of 94 proposed disorders were turned down for the DSM-5.
One of those was sensory processing disorder, or SPD. Officially only a hypothesized neurological disorder, SPD is a term used to refer to the difficulties people experience taking in and responding to sensory information.
“I wasn’t really surprised,” Denver-based clinical psychologist Dr. Susan Blumberg said of SPD not making the cut. “SPD is not a medically diagnosed disorder. It was first identified by occupational therapists.”
Blumberg’s 18-year-old daughter, Aviva, has struggled with SPD her whole life. Aviva is “sensory seeking,” which means she searches for constant stimulation. She also has sensory motor issues that affect her balance. But, given all the possible ways individuals’ sensory systems respond, these are just two of the thousands of ways SPD can manifest. The long list of symptoms of SPD range from adults struggling to stay focused at work, to children craving rough-housing, to toddlers who don’t want to cuddle.
The Greenwood Village-based STAR Center and SPD Foundation, founded and run by Dr. Lucy Jane Miller, are the leading foundations dedicated to making advancements in understanding and treating SPD. Miller and her groups have also spearheaded the fight over the past 19 years for official recognition of SPD by the DSM-5. Despite the extensive efforts, Blumberg wasn’t the only one who wasn’t surprised by the decision.
“We always knew it was a bit of a long-shot,” said STAR Center associate director of research Dr. Sarah Schoen.
Without official recognition by the DSM, children and adults struggling with SPD often can’t afford to pay for treatment out of pocket. In circumstances like these, when a disorder goes unrecognized and treatment remains unaffordable, patients and family members have to do whatever it takes to get some kind of help.
Aviva’s therapist has had to falsely diagnose her with ADHD — a disorder long approved by the DSM — so that her family could afford to provide her with some, albeit insufficient medication for her symptoms. Aviva also has Asperger’s disorder, and the DSM-5’s adjustments to the Asperger’s criteria ended up including more sensory issues, which has helped her access more appropriate treatment.
“But, it was kind of luck of the draw,” Blumberg said, “and I think that’s a problem.”
For now, there is no medication for SPD, only treatment for coping. With a lack of funding for SPD research, it will be difficult to make progress on finding a way to sufficiently treat children and adults with the condition.
“It is a catch-22, because it’s hard to get grant support for a disorder that doesn’t exist in the DSM,” Schoen said.
The power dynamic at play in the DSM process is palpable. Before her interview with The Colorado Independent, Schoen asked for questions to be submitted ahead of time. During the interview, her extreme caution in answering signaled that she did not want to ruin SPD’s future chances for funding or making it into the next edition of the DSM.
A catch-22, indeed. It seems that dedicated experts outside of the task force don’t have a say — nor do most have the power they need to gain a say — about whether the disorder they’re advocating will qualify. Individual patients certainly don’t have a say. The chairman of the last (DSM-IV) task force doesn’t have a say. And, what’s more, not even divisions within the American Psychiatric Association have a say. In August 2011, APA Division 32, the Society for Humanistic Psychology, wrote the “Open Letter to the DSM-5.” The petition requested a revision to the closed decision-making process, proposing that the development of the DSM-5 include psychologists outside of the selected task force committee. Though 15,000 people signed the petition, it made no difference.
Who is in a position to make a change?
Early on in the 14-year process, the DSM-5 Task Force started a website to post updates about revisions, additions and subtractions to the DSM along the way. This gave the process the appearance of transparency and fairness. But the veneer of openness had a downside — it invited people who weren’t up-to-date on all of the research to change the course of the process according to their particular passion or how many people they could band together rallying in support of classifying a certain disorder.
“It’s been interesting that they’ve added more openness than previous years, but then in the end, a lot of the things they said they were leaning toward didn’t make it through,” Erdal said. “I thought the website was a good step, but when the long-term suggested changes didn’t come to fruition, it makes you wonder, what just happened?”
Despite its controversies, the manual has become indispensable in helping mental health professionals as well as those outside the field discern between disorders that used to be melded together.
“My definition of OCD may be your definition of depression,” Erdal said. “If we’re all reinventing the wheel, it’s a nightmare.”
The DSM isn’t going anywhere anytime soon. Experts say that doctors, psychiatrists, psychologists and therapists — and patients, too, perhaps most of all — must remember to consider the DSM a guide, not a bible.
“I just don’t think a perfect document is possible,” Erdal said. “We are, as a human species, a moving target.”