By Christine LaCerva
There is a fight going on in psychology. And we — the staff of the Social Therapy Group — want you to know about it.
I’m talking about the controversy surrounding diagnostic labeling of patients in the field of mental health. It’s a national fight, in response to “DSM-5,” the American Psychiatric Association’s upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, and it’s currently being fought by progressive practitioners and the various professional organizations they belong to.
DSM-5 is the official manual of characteristics used to define emotional illnesses and make the diagnoses that mental health practitioners must give patients in order to be reimbursed by insurance companies, and/or to prescribe the medications that you or your children might need. The new edition makes many changes to the criteria for various diagnoses, and there has been a level of professional and public reaction rarely seen in the hidden corridors of the mental health field.
This controversy is of great interest to us at the Social Therapy Group. As you may know, social therapy is a radically humanistic, non-diagnostic group therapy. Social therapy is explicitly pro-development and explicitly anti-label. My close friend and colleague Lois Holzman, director of the East Side Institute, has written passionately and eloquently about these issues (click here for one of her blog posts on the subject). As Dr. Holzman points out, controlling and defining diagnosis is nothing less than a turf war, as official organizations fight for (more than) their slice of the treatment pie. It’s a big, lucrative pie, and getting bigger all the time as more and more people suffer the emotional ravages of living in a society that increasingly fails to provide for the needs of ordinary people.
For years, along with many other progressive practitioners and postmodern social scientists, the Social Therapy Group has spoken out against the inhumanity of diagnosis-driven mental health treatment, which we think is pseudo-scientific labeling that can greatly affect a patient‘s well-being. For children, there’s a particular danger — diagnostic labels can track them down a road that’s very difficult to reorganize. In social therapy our work with families and children has helped many children grow beyond their labels. But their families have to work incredibly hard to get them declassified — that is, out of special education and with the diagnosis removed. Many schools will not accept children with a prior diagnosis, regardless of any progress they have made!
But as disturbing as the impact of specific diagnoses can be, there’s an area of this controversy that’s even more important to me. In a recent article in the New York Times reporting on the fight around DSM-5, the author poses what he sees as the central question of this debate: “where to draw the line between unusual and abnormal.”
I find that question offensive. How did it become the question in the first place? What kind of descriptions of human beings are these?
For us at the Social Therapy Group, the central question is why diagnose at all? I mean this in no way as a denial of mental illness — depression, anxiety and many other extreme and painful emotional experiences are real, and affect millions. But who benefits from diagnosing them?
Diagnostic categories are not benign. They have a long, turbulent and well-documented history in this country that exposes and clarifies the many ways in which diagnosis shapes our world. We can look back to the 1950s and ’60s, when large numbers of African American children were diagnosed as “mentally retarded” while their white, middle-class counterparts with the same challenges got the more acceptable diagnosis of being “learning disabled.” Today, many critics of DSM-5 point out that these categories that shape peoples’ lives are heavily over-determined by government funding and partnerships with pharmaceutical companies. No, diagnostic categories are not neutral. They are social/political phenomena and function as methods of social control, determining who receives benefits and who doesn’t; who gets the “socially acceptable” label and who doesn’t.
In my experience as a clinician, diagnoses can be stigmatizing; at the very least they over-determine how people feel about themselves. When I ask children I work with if they have been given a diagnosis (they often have) I ask what it is, and what they think it says about them. Often, in a variety of ways, they answer that their brain is broken. What follows, of course, is their understanding that only medication can impact on what is happening to them — whether it’s Attention Deficit Hyperactivity Disorder (ADHD) or Pervasive Developmental Delay, these children learn that they are helpless.
Abnormal? Unusual? Who gets to decide?
I think that rather than focusing on changes in definitions and spending untold millions of dollars coming up with the “right” kind of label, mental health professionals could consider doing more of what the Social Therapy Group does: working together with diverse groupings of adults, families, therapists and young people themselves, to create new solutions that will help all of us — unusual and usual — to grow, create our lives, and develop as creative, productive citizens of our communities.
I want to know what you think about all this. The issue of diagnosis is a sensitive one. Many people have felt relieved to have a name given to their painful human experience. Others feel that getting help to grow and develop is what’s primary. We want to know what you think about this controversy and the questions we are raising. Let us know where you stand — we’d love to hear from you, so please leave a comment below.
[...] my March post (Abnormal? Unusual? Who Decides?) I wrote about a controversial topic in the field of psychology — the pending publication of the [...]
I feel that the only reason they don’t want to make Social Therapy a big part of the psychiatric community because they will loose out on lots of money. Most of the people diagnosed will want to try something different to see If they will be able to function without medication. Yes some cases are extreme and they might need the medicine. I feel more times than not people are taking unnecessary prescribed medications to treat something that can be treated without putting chemicals in your body. My professor Rafael Mendez had the class read a article last semester about how the pharmaceutical company are corrupt in making their medications FDA approved. It was an eye opener to find out that the scientist who are supposed to make a decision about a medication being safe is being sponsored and payed by the consumer who wants the medication approved. People in general need to do research and see they are other options out there such as social therapy and how it works. When they go to the doctor most doctors make it seem that if you don’t take the medicine you won’t get cured and it’s the only way for your diagnosis to be treated.
Brenda
Yes I certainly agree with you. Many people do want to partcipate in a therapy that does not label or stigmatize them. There really is a human cost to diagnosis. Many children I see feel that their medication alone helped them. It takes time to build a relationship where they can experience that they have been an active creator of their own growth and development. As a social therpaist I am not anti-medication. I think what we add to the equation is medication plus development. When we do prescribe meds to children it is after a slow period of time –sometimes a year– before we do so. It is part of the child growing and taking control over her life. Then it can be beneficial if it is absolutely needed.
While I agree that labeling can be the cause of stigma and a sense of helplessness, I find it difficult to imagine a world without labels. People need to be able to identify the world around them as well as connect it to and with the people around them. As bad as it may be to be labeled for an “illness” and have to live with it, I find it much worse to have to live with something that cannot be explained, which in my eyes would provide for a more isolated experience and no connection to others who may have be experiencing the same thing.
Austin,
A world without labels — interesting comment of yours. I wonder how you came to think that explanation is necessary to create relationality? I think building and creating together without having to know or explain or interpret what we are doing can be quite productive . What we have is what we have built together. Often that is something of value for all involved. It certainly was for me and my patient Matt.
Thanks for your comments
I appreciate the insights obviously gleaned from long hours with many different types of human beings struggling with personal, family and societal challenges. The dominant questions for me have always been: what is emotional mental wellness? and how do we overcome the stigma attached to certain labels? Labeling is a tool, it can be used in skillful ways and not so skillful ways, skillful being defined as does it really help the person to navigate their challenges better?
I find the Johari four room box helpful, with the four possibilities being:
high functioning low dis ease
high functioning high dis ease
low functioning low disease
low functioning high disease
We want to help move people towards the high functioning low dis ease room as much as possible.
Keep up the great work!
Dr Victor, pediatrician and public health doc.
Dr. Victor,
Thank you for your comments. The questions you pose here are central to the methodology of social therapy . The centerpiece of this work is a search for method– an exploratory performance of continuously opening up how we see ourselves and others and ways that this activity is culturally overdetermined. I have had five year olds who through their play begin to create new ways of performing their lives. Exhilarating.
As human beings we can be culture makers rather than merely consumers of what exists. This is activity we do with our patients. Does labelling have damaging effects? Yes and the answer is contextual for sure. However, in my experience children are very impacted on by the labelling diagnostic process. They feel singled out, different from others, impacted by the dis ease of the diagnosis.
They often give up because it seems beyond their reach to work through the enormous weight of a doctor saying their is something wrong with their brain. I know as a pediatrician and public health doctor, you have dedicated your life to addressing these kinds of issues as well.
We do everything we can to help those children and their families create an alternative experience—-one where they can play and perform with their hyperactivity, their anxiety, their capacity to self regulate and to support others to do the same. Many of the kids we see are helped by this. They begin to talk about the labelling activity -the kind we all participate in.
They grow; they learn you can perform something else. You can make choices and let other people be a part of creating who you are. They learn to become culture makers — active creators of their own lives.
Thanks again
I am so glad to read this article… it is so true its scary!!! it seem to be a book full of ways to make you worst than what you really are…. I know this from personal experience to know that all that is a bunch of bull crap… I have emotionality that is my feeling I don’t think a book should tell me there is something wrong with me because of the way I feel.
Angelique
Having grown up in a very psychologically-oriented family (and a very psychologically-oriented culture/society), I have fought an almost 30 year battle to combat the impact of diagnosis (“neurotic” and other assorted labels). How fortunate I am to be part of a therapeutic community which creatively builds with all of our pain, craziness and upset without slapping a label on us. In my very first social therapy session circa mid 80′s it was suggested to me that I didn’t have to live my life as someone who has all these problems, but instead I could create my life with everything — including my degradation, self-involvement, and tendency to dramatize life. And so I have. Social therapy saved me from the clutches of psychology which can be so damaging. I have a nephew who has been diagnosed his entire life – he’s now almost 30. It has been very painful to see how his life has been defined by his diagnosis. I’m grateful for social therapy and so glad this conversation is taking place.
Thanks for your comments here. Fred Newman, the founder of social therapy, called for the democratization of diagnosis! Friends and colleagues alike can get together and play with naming how we are. It is an activity that human beings can do. Unscientific? You bet. Playing together –curative.
Two years ago, before I joined a social therapy group I was feeling very depressed. A friend of mine convinced me to go with her to the local hospital and see if someone could see me and give me some guidance about what to do about my depression. After studying a long list of different areas in the hospital we thought that the psychiatry section would be the ‘right label’ (it sounded like psychy to us). Apparently whether it was the right label or not, the people there had a very different view of what psychiatry had to do with (to) depressed people. Once I signed to be admitted to the clinic (no one told us what ‘admitted meant – another label we should have been more careful about), we were sent to a room where a police man took my belt, shoe lances, and cell phone. My friend told them that it was not necessary, that I was there for ‘normal depression’ meaning that which many people had. They did not care, and continue their routine. Next we were place on a waiting room where we waited for 5 hours. In there we saw people that seemed lost and in suffering wondering around and/or being treated very poorly. After few hours my friend and I asked several times when I was going to have someone talking to me, and they were very annoyed by our request. At some point, after 4 hours or so, we said we would leave (did not know I had not rights to leave until someone signed the paperwork), and so they got very upset with us. They were very paranoid and scared for no reason (we were not even as upset as anyone standing for too long on a walmart line). They told us that we needed to come down or I was going to be restrained and my friend kicked out of the facility. I never felt more afraid on my life, we both thought we would go crazy for real. That day we learn few important things about labels: Once you have one, ‘professionals’ don’t need to look at you no more – they already seem to know what is going on even when what is in front of their faces is not what they are seeing. (We could not resemble anything close to someone dangerous or trouble maker). We learn that the label itself may give away one’s freedom and authority over oneself leaving that power and right into ‘a professional’. The solution that we found at that time (a response that we would recommend) was to do whatever we needed to do or say to get the hell out of there as soon as possible. And we did.
Alejandro
Thank you so much for your response. I deeply appreciate you writing about this very personal and painful experience you have had with the activity of diagnosis. Given the organization of health care in this country, it can be very difficult to get help. Sometimes very caring professionals can be held back from helping by the roles and rules of the institution. Liability and regulation become the guidelines and people who need help are left to deal with the impact of coercive and dehumanizing policies.
So glad you made use of the experience you have had to develop as a giver. Thanks for giving this to us.
I found this post to be rather timely, with regards to my own battle involving my insurance company. Essentially, my insurance company would not reimburse me (to the small degree that they do) without first obtaining a diagnosis. However, having forced my licensed therapist into diagnosing me, the insurance company immediately balked, suggesting that my heretofore undiagnosed condition was in fact pre-existing! Never having been diagnosed before, how can my “anxiety disorder” have been pre-existing?
Up until the insurance company’s demand for labeling, I had thought myself a fairly normal person, with maybe an extraordinary connection with my emotional side. And while I do occasionally feel and display anxiety with regards to certain situations in life, I certainly feel in no way defined by this aspect of my personality. Furthermore, I feel this diagnosis of me to be nothing more than an institutional pigeon hole in which the system can now place me, taking control of my development from mine and my therapists’ hands.
Thankfully, I have The Social Therapy Group and Christine LaCerva at my back, helping me to fight this limiting diagnosis driven “treatment plan” that DSM-5 and it’s proponents would ultimately have me follow.
With The Social Therapy Group, I get real help, not simply a series of exercises or prescription drugs that labeling me would likely be the result under DSM-5 guidelines.
I am more than the sum of my parts. Defining or “diagnosing” merely one aspect of me is as narrow and dangerous an idea as any in history. A bad idea indeed.
Thanks for your comments here. They certainly expose the business of diagnosis. It is good to hear that your relationship to your anxiety is a part of who you are and how you have learned to respond to life, and is not the centerpiece of how you live your life!
My initial attraction to Social Therapy–more than 30 years ago!–was in part my intense response to labeling and diagnosis. I didn’t like being labeled as a child; I was appalled by the labeling my students when subjected to when I was a teacher; and the diagnosis aspect of psychology turned me off completely to the possibility of ever going into therapy. Enter Social Therapy! I was blown away by its radically humanistic approach and I still am. When I see the latest addition to the long list of named “abnormalities” I assume it’s another opportunity for practitioners to bill insurance companies. But at what price? Where is this going and what must it be like to be grief stricken (about anything!) only to learn that it’s now a mental disorder. This is outrageous. I’m thankful to be part of a movement that empowers human beings to grow emotionally without shame, labels, or manipulation. I hope this dialogue expands and kicks some serious ass!
Caroline
Glad to hear that a non-diagnostic therapy is of help to you! In terms of this controversy that is going on , it is also important for us to recognize that some people have felt relief from getting a correct diagnosis. People also report that finding a description of what they are going through helps them feel less alienated, less alone and more able to grow. I guess it raises the question of what relief is and how it is created. Relief in a social therapy group is produced by creating environments where people can create their collective development together. They can describe each other or themselves in ways that feel right yet what is actually helpful is no longer being alone trying to figure out how to grow beyond what you know how to do by yourself. Learning to be with people and build new kinds of relationships helps us be less alone and less alienated with new possibilities.
I find this post really moving. My ex-partner who was locked up in a psych ward for years, which leans me toward hating diagnoses. But I also found it very helpful, years ago, to have a therapist say to me “yes, this is bulemia. let’s work on doing something different.”
But I think it’s crucial for patients to have a role in deciding when and how diagnoses are helpful to us or not.
Becca
Fred Newman, the founder of social therapy, felt very strongly that patients have a role in deciding when and how diagnosis could be used. He often spoke about democratizing the diagnosis activity. If people can join their friends and play with diagnosis— that activity might be of value. In our groups with children and families we often play around with funny names and labels of what we do together. We do not relate to this game as ” the truth” about someone but as a building activity where the group can play together with whatever emotional life experiences they are having.