The Center for Rehabilitation and Recovery provides assistance to the New York City mental health provider community through expert trainings, focused technical assistance, evaluation, information dissemination and special projects.

This issue of the Center’s newsletter focuses on psychiatric diagnosis, the system that defines our clients as peers, consumers, or patients in recovery. What has changed from the DSM-IV to the DSM-5, released this month? What problems does the DSM-5 have? How might a better manual be created? What alternative classification system might be used in a decade?

To answer these questions, we consulted a variety of stakeholders with sharply conflicting views, ranging from the hugely influential psychiatrist in charge of creating the DSM-5 to a person whose problem was elevated to a disorder in the DSM-5.

Three Perspectives on the DSM-5 from Superstars in Psychiatry

We don’t always associate diagnosis with recovery, but getting the proper diagnosis—or receiving no diagnosis, if that is appropriate—is often a first step. But how do we know whether a diagnosis is right? Might a diagnosis reflect intolerance, rather than pathology, as the label homosexuality once did when it was included in the DSM until 1973? And how can we tell what an illness is when so many disorders overlap, or often occur together, as depression and anxiety do?

Stepping up to the plate to describe the fifth—and latest—edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), just released this month, are three of the people most responsible for shaping psychiatric diagnosis in America today: David Kupfer, MD, Allen Frances, MD, and Thomas R. Insel, MD. Their very different takes on the DSM-5 may inform and inspire future discussions about what conditions our client and patients are recovering from.

Dr. Kupfer spearheaded the DSM-5 Task Force, which prepared the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. He has produced more than eight hundred publications covering a variety of clinical topics, primarily depression. In addition, when he chaired the department of psychiatry at the Western Psychiatric Institute and Clinic, he transformed it into a juggernaut of research and papers and a magnet for funding.

Dr. Frances was in charge of the development of the DSM-IV. An active researcher and prolific author, he also founded two journals that became standards in psychiatry, and is chair emeritus of psychiatry at Duke University.

For the past few years, Dr. Frances widely publicized his views on overdiagnosis and overtreatment psychiatry, writing Saving Normal: An Insider’s Revolt Against Out-of-Control Psychiatric Diagnosis and Big Pharma, and the Medicalization of Ordinary Life.

Dr. Insel, formerly a top researcher, focuses on diagnosis from a different angle. As Director of the National Institute of Mental Health, he promotes the Research Domain Criteria (RDoC). The RDoC, an ongoing attempt at the National Institute of Mental Health to classify disorders using advances in neuroscience, genetics, and behavioral health, looks at factors, such as glitches in neural circuits, or commonalities in problem genes, to develop a taxonomy of mental illnesses. Because this classification would be based on underlying causes, rather than symptoms, it would make understanding, and treating, a disorder easier. However, the RDoC will not be ready for clinical use for a decade.

Here, these superstars present their take on the DSM-5 for RECOVERe-works readers.

DSM-5 Reflects Dynamic Nature of Mental Illness through Lifespan
David J. Kupfer, MD
Chair, DSM-5 Task Force
Thomas Detre Professor of Psychiatry, University of Pittsburgh

The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders incorporates nearly two decades of scientific advances and clinical experience, resulting in the gold standard in psychiatric diagnosis as it is today. Before page one of the book, these advances are evident in changes to the manual’s table of contents.

We revised the organization of chapters to signal how many disorders relate to each other based on underlying vulnerabilities and symptom characteristics. Certain disorders come under more comprehensive chapter headings and others have been broken out as separate chapters to reflect our greater understanding and appreciation of their probable ideology. It is our intention that the revised structure remain flexible to help integrate what we hope to learn in the future about the underlying causes of these disorders.

This organization is a real departure from every previous manual, in which the sequence of chapters, and the chapter titles themselves, seemed almost like an afterthought. DSM-5’s linear logic should benefit patients above all, particularly individuals who have been diagnosed with multiple disorders within and across disorder groups. It may be that they are actually dealing with a single disorder with a range of symptoms that present differently at different times.

DSM-5’s framework also recognizes age-related aspects of disorders by arranging diagnostic chapters and categories in a chronological fashion, with diagnoses most applicable to infancy and childhood listed first, followed by diagnoses more common to adolescence and the early 20s, and ending with those relevant to adulthood and later years. Indeed, the entire manual is organized along a developmental lifespan notion within each chapter, and within individual diagnostic categories.

This change helps underscore how a disorder may persist into later life and be impacted by the particular demands of those years. This important change includes the elimination of a chapter dedicated to infants, children and adolescents. Instead those disorders are included in various other chapters.  

Rather than isolating childhood disorders or ignoring the developmental continuum that influences many disorders, the new DSM structure aggregates disorders based on similar pathology and emphasizes development across disorders.

DSM-5 helps capture the dynamic nature of mental illness across the lifespan. This new approach is just one way this guidebook is helping clinicians better serve their patients.

Dangers of the DSM-5
Allen J. Frances, MD
Chair, DSM-IV Task Force
Former Chair, Psychiatry Department, Duke University

I am concerned that DSM-5 will result in the overdiagnosis of people who don't need treatment, and further distract attention and resources away from the clearly ill, who are already badly shortchanged both in service delivery and adequate housing.

Except for Autistic Spectrum Disorder, all of the changes in DSM-5 expand the boundaries of psychiatric diagnosis. Grief becomes Major Depressive Disorder; worry about cancer becomes Somatic Symptom Disorder; forgetting of old age is Mild Neurocognitive Disorder; overeating is Binge Eating Disorder; temper tantrums become Disruptive Mood Dysregulation Disorder; and just about everyone who wants stimulants can qualify for Attention Deficit Disorder.

Meanwhile, we have one million psychiatric patients in prisons because it is so hard to get community treatment. Our mental health resources are already terribly misallocated. DSM-5 makes this worse.

DSM-5 has no official standing on its own, and it will influence decisions only if an agency gives it special standing. The official codes are ICD-9-CM, and these are available for free on the internet.

My recommendation is that people ignore DSM-5. In my opinion, it is unsafe clinically, scientifically unsound, and a bad guide to mental health policy decisions.

The Best We Have for Now
Thomas R. Insel, MD
Director, National Institute of Mental Health

In a word, DSM and ICD (the International Statistical Classification of Disease) are what we have today for clinical diagnosis. I am old enough to remember psychiatry before DSM. We do not want to return to that chaos. NIMH is a research agency that is planning for a new diagnostic system that may be ready for clinical use in a decade. For research to improve on DSM or ICD, we need a new paradigm that includes many kinds of information in addition to clinical symptoms. We have launched the Research Domain Criteria (RDoC) project as a guide to researchers, but it is not ready for clinical use and should not be considered as a competitor for DSM or ICD.

Top

On My Problem, and Its Promotion to a DSM-5 Disorder

Anna Leah Braudes

Jokingly, I'd called myself an over-collector for years, but first realized that I am a hoarder in 1993. As, I began to notice the increasing (stacks of) newspapers in my large loft. When I recognized I would never read an old newspaper as a new one came in every day, I bundled the stacks with twine and put out several each week for recycling until they were all gone. I haven't bought a newspaper since.

Then I began to judge my many other "collections." Some of them included many linear feet of books, cartons of scrap paper, much clothing that didn't fit into over-stuffed closets, and unused computers and peripherals. The bulk of my stuff was excessive, obsolete, damaged, inaccessible, and generally useless to me, but I called much of it--projects.

I was appalled to find myself a genuine hoarder. I disliked the word hoarder, but could find no appropriate substitute.

I began reading about hoarding, especially papers and books by Professor Randy O. Frost. There is only one mention of hoarding in the DSM-IV, inappropriately placed under the heading of Obsessive Compulsive Personality Disorder. That seemed peculiar to me for such an entrenched, unwavering, life-impairing behavior.

I thought of myself as a most self-aware hoarder, i.e., no longer pretending to have a rational reason for keeping each item, just keeping what I wanted to keep. This helped me to discard more easily.

Believing that I could help others, I started a support group at a senior center. There I've been leading a support group for hoarders for over six years, and I’ve refined my personal strategies into three basic rules to use as a starting point.

I have worked to reduce the members' feelings of disgrace, and to help the group members stop family members and friends from speaking disrespectfully to them about their homes. They loved learning that Randy Frost believes that hoarders have above average intelligence.

My main goal is to facilitate risk-taking, but we focus on hoarding as the most impairing condition. This is a very difficult behavior to change, but to try to do so, I've arranged for field trips, homework, show and tell, and speakers. We also seek persons and/or organizations that have use for specific categories of items, as we can release our stuff to them more easily.

Very recently, the DSM-5 has been published, and hoarding has been elevated to "Hoarding Disorder." I have not seen this new section yet, but I have read previews of it, and it seems accurate and sensitive. I've shared the previews with the group, and we understand that the inclusion of a Hoarding Disorder in the DSM-5 may stimulate funding for research, and insurance coverage for treatment. With the label or without, however, I don't let members trivialize the condition by saying that she or he "simply needs more time" to de-hoard.

I've referred to hoarding as a mental illness all these years, but some group members are uncomfortable that now they have an official "mental illness." Others do not care about another label. However, I believe that elevating hoarding to a Disorder encourages hoarders toward Radical Acceptance of their problem, which is the first step in trying to change  behavior.

Top

The Mental Illness/Recovery Memoir: From Personal Artistry to Political Action

Carl Blumenthal

Fifty years ago, the stigma of mental illness meant The Bell Jar and I Never Promised You a Rose Garden were published as fictionalized, pseudonymous chapters of Sylvia Plath’s and Joanne Greenberg’s lives. Writers of such autobiographies now are no longer figuratively locked in closets. In fact, during the past 20 years, the literary doors have been blown so wide open on once hidden mental illnesses, the publishing industry, and a younger, previously unknown, group of memoirists seem to revel in misery.

Beginning with Susanna Kaysen’s Girl, Interrupted (1993) and Elizabeth Wurtzel's Prozac Nation (1994), such authors, overwhelmingly female, white, and middle-class, became performers, or, you might say exhibitionists, in their own right.

The artistic brain-wave they induced is admittedly cathartic, and many of these tales are well-written, often with appropriately black humor. However, the memoir, in general, has multiplied at a time in our culture when truth has become stranger than fiction. The mental illness/recovery memoir ups the ante, for what could be a greater departure from reality (and still be within the bounds of vicarious reading)!

After Newtown, it's clearer that at the root of these memoirs, as well as the scourge of gun violence/rights, is good/bad-old American individualism. Lost in the blame of the mental health care system (and out-of-control, “crazy people”) is any recognition that in the past 40 years those living with mental illness have taken their destinies in their hands through collective as well as individual action.

In response to the regrettable chaos created in the 1960’s and 70's by closing so many state hospitals, some ex-patients or “psychiatric survivors,” as they called themselves, mirrored other civil rights movements of the time by protesting continuing abuses and establishing self-help programs.

Those efforts evolved into the community-based services of today. Whereas the debate about the “murderous mentally ill” too often focuses on forcing them to take medication, the approach of this new “psychiatric rehabilitation” is much more comprehensive and has enabled many to live fuller, freer lives.

As someone with bipolar disorder, I have not only lobbied for these reforms, but also benefited from them. No one is more aware of the treatment inadequacies that remain than those who have been through the system. We fear that over-reactions to Newtown and other mass murders ignore acts of violence committed by “normal” people and undermine the tenuous progress we’ve made.

These political and professional changes have reduced the stigma of mental illness, and, in part, made it safer for the many memoirists of this sub-genre to open up about, and even flaunt, their "symptoms" and strategies for self-improvement. While their often powerful prose can inspire us to reconsider our stereotypes of those with mental illness, the theme of the creative individual overcoming adversity tends to downplay the social and economic contributors to mental illness, such as racism and poverty.

To illustrate, Elizabeth Wurtzel capitalized on the early notoriety of Prozac Nation with More, Now, Again: A Memoir of Addiction (2002). Lauren Slater wrote about the trauma of sexual abuse, depression, and the rare Munchausen's Syndrome, respectively, in Welcome to My Country (1996), "Prozac Diary" (1998), and Lying: A Metaphorical Memoir (2000). Myra Hornbacher's Wasted: A Memoir of Anorexia and Bulimia (1998) put those conditions on the literary map. She followed with Madness: A Bipolar Life (2008). Caroline Knapp's Drinking: A Love Story (1996) gained her an acclaim that made readers notice Appetites (2003), an account of anorexia.

Junkies of the memoir like me often measure success by the amount of sensationalism on the page. After all, what's the point of living quiet lives of desperation when you can persuade people to pay attention by threatening them with a pen? Some recent examples are Kiera Van Gelder’s The Buddha and the Borderline: My Recovery from Borderline Personality Disorder through Dialectical Behavior Therapy, Buddhism, and Online Dating (2010), Sarah Benincasa’s Agorafabulous! Dispatches from my Bedroom  (2012), and Stacy Pearshall’s Loud in the House of Myself: Memoir of a Strange Girl (2012), about borderline personality/bipolar disorders.

The preponderance of women over men who take literary pride in their "flights from the cuckoo’s nest" is double-sided in its significance. It suggests that females are still considered the emotional sex, but now they are turning that “weakness” into strength.

The question is: Does personal artistry lay the groundwork in the reader's mind for social and political action, or does it distract from such conclusions? You can't automatically expect these writers to demonstrate their solidarity with the mentally oppressed of the world. Nonetheless, some do see their stories in a larger context.

Dr. Elyn R. Sachs is one such role model. In The Center Cannot Hold: My Journey Through Madness (2008), she describes her work as a student in a Yale Law School clinic, protecting the rights of folks with mental illness, when she wasn’t a hospital patient herself, battling schizophrenia. Eventually, she earned a dual appointment on the law and psychiatry faculties at USC, where she continues her advocacy.

The emphasis among most of today’s reformers is on transforming the mental illness system from equating patients with their diagnoses to enabling them to becomewhole human beings. No doubt about it, this is a long hard slog, and we will need to hear from consumers of all genders, races, and classes to get there.

Carl Blumenthal is a peer advocate at Baltic Street AEH (Advocacy, Employment, Housing) and a culture critic for the Brooklyn Daily Eagle.

Top

The Latest Research

Elizabeth Saenger, PhD

Hansen HB, Donaldson Z, Link BG, Bearman PS, Hopper K, Bates LM, Cheslack-Postava K, Harper K. An independent review body could improve mental health diagnosis and treatment in ongoing revisions of the DSM. Health Affairs. 2013;32:1-11.

This month, the American Psychiatric Association released the fifth edition of its Diagnostic and Statistical Manual (DSM-5). This revision of the book often referred to as the Bible and dictionary of psychiatric diagnosis in America generated intense controversy among some, but not all, clinicians, researchers, and other stakeholders. Some patients were upset—or heartened—when their diagnosis was newly included (or excluded) in the latest edition, while advocates feared that broadening some categories would encourage disease mongering, and narrowing others might threaten insurance coverage.

However, the question of who should create this powerful manual—the rules of the game—often received less attention. An exception is the analysis by Helena B. Hansen, MD, PhD, of NYU, and her colleagues at Columbia. This month, they noted that the DSM-5 would influence billions of dollars in insurance payments and government resources, not to mention the diagnosis and treatment of millions of people in the US, and research abroad.

Hansen et al note that the manual did not take into account many causes that might, perhaps mistakenly, result in diagnosis. For example, the manual did not examine institutional factors, such as the marketing of pharmaceutical companies or insurance reimbursement that might influence the way the manuals evolve, and the results they produce. To cite but one example, “children are three to four times more likely to be diagnosed with attention deficit hyperactivity by a US provider using DSM-4 than by a European provider using the International Classification of Diseases, Tenth Revision. Consequently, 4 percent of children in the United States are prescribed stimulants for the condition, while only 0.3 percent of children in the United Kingdom are” (page 3). Hansen et al also note ethnic and other disparities in diagnosis.

However, Hansen et al go a step further than most critics by proposing an independent review body, hosted by a scholarly organization, such as the National Academy of Sciences, to provide input into ongoing revisions of the DSM. The review body could “monitor variations in diagnostic patterns, inform future DSM revisions, identify needed changes in mental health policy and practice, and recommend new avenues of research” (page 1). For example, it could monitor changes in the prevalence of particular disorders, or the emergence of disparities in diagnosis between groups, so they could be investigated.

In short, what Hansen et al propose is a collaborative and interdisciplinary effort to draw on the DSM-5 Task Force expertise to define disorders, but add the insights of professionals in the social sciences and population health, to create the equivalent of an  inclusive think tank. The arrangement they outline would reflect the significance of contexts, from gender to culture, in understanding and diagnosing differences, and it could identify red flags to facilitate mid-course corrections.

Top

Free Publications on Depression, Anxiety, and Much More

The NIMH offers more than 30 free publications, ranging from Suicide to A Parent’s Guide to Autism Spectrum Disorder, from PTSD to Panic Disorder, and from Eating Disorders to Borderline Personality Disorder. Help educate parents, children, clients, and yourself with up to 15 copies of each title. See the publications order page on the NIMH website.

Top

Center Education and Training

For more information, or to register, please visit us at http://www.coalitionny.org/the_center/training or email Deborah Short at [email protected].

Cognitive Behavioral Techniques & Skills Development in Group Work

Facilitators: Amanda Saake, LMSW, and Laura MacLeod, LMSW
Date: Session 1: June 3rd, Time: 1:30-4:30pm
Date: Session 2: June 17th, Time: 1:30-4:30pm
Location: 90 Broad Street, 8th floor, Conference Room

Groups are an important clinical tool in mental health services. With the increasing emphasis on recovery, cognitive behavioral approaches and skill based work are essential. This two session training will cover both theory and practice. Participants will learn essential group work principles and skills, and how to use the work in the context of their agency and group setting.

Session One: Cognitive Behavioral Overview and Foundations of Social Work with Groups: Planning, Purpose, Content, Group Dynamics. Explore and address specific issues related to these principles: mandated clients, open and closed groups, and needs assessment.

Session Two: Continue and Deepen the Learning in Session One. Skill Acquisition: Learn specific skills for problem solving, conflict management, and fostering group cohesion. Experiential work using improvisation to put the skills into action and demonstrate group roles and dynamics.

Introduction to Benefits Management

Co-Facilitators: Margie Staker, CQSW & Patricia Feinberg, MS, Certified Benefits Planner
Date: June 6, 2013 Time: 9:30 a.m. – 12:30 p.m.
Location: 90 Broad Street, 8th floor, Conference Room

This introductory training is for staff new to the subject of Benefits. A FREE half-day training for clinicians and other staff interested in learning the details of benefits management. The latest changes in SSA guidelines will also be discussed. Participants will have the opportunity to:

• Understand the fundamentals of the Social Security System
• Comprehend the difference between SSI and SSDI, Medicaid and Medicare
• Gain knowledge of resources that support consumers in theirliving and working goals
• Learn to help consumers effectively use benefits to support their recovery

Motivational Interviewing Booster Session

Facilitator: Laura Travaglini, MA, LMHC
Date: June 21, 2013 Time: 9:30 am – 3:30pm
Location: 90 Broad Street, 8th floor, Conference Room

This Motivational Interviewing Booster Session is for individuals who attended the Center for Rehabilitation and Recovery Motivational Interviewing trainings in 2012 with Laura Travaglini.

Dylan’s Law

Facilitators: Pat Feinberg of CCRR, Jody Silver of DOH/MH
Date: June 24, 2023 Time: 1:30 p.m. – 4:30 p.m.
Location: 90 Broad Street, 8th floor, Conference Room

A survey of 1,000 people shows that 50% of people view a pet "as much a part of the family as any other person in the household.” Thirty five percent include the pet in a family portrait, and 25% of married people report that their pet is "a better listener than their spouse." Similarly, people with disabilities of all kinds are finding that a service or emotional support animal helps them in many concrete and psychological ways.

This workshop will focus on research which reveals very specific ways a dog can be trained to help a person coping with psychiatric symptoms, such as disorganization, memory loss, irritability, anxiety, fearfulness, and hypervigilance. Resources presented will include helpful websites and training programs, as well as criteria for finding the right dog or other animal especially for you or the people you serve.

* * * * *

Opinions in this newsletter may not reflect the views of the Coalition for Behavioral Health Agencies, Inc, or the editor.

Top