As a Professor of Medical Anthropology at Harvard University’s Department of Global Health and Social Medicine and a Professor of Psychiatry at Harvard Medical School, Kleinman has profoundly influenced how medical professionals understand the interplay between culture, illness, and healing. His extensive body of work includes seminal books and numerous articles that have become foundational texts in medical anthropology. These writings explore the crucial role of personal and cultural narratives in shaping medical practices and patient care.

In recent years, Kleinman has increasingly focused on critiquing the prevailing practices within psychiatry, particularly the over-medicalization of mental health issues and the neglect of broader social and personal contexts that significantly impact patient care. His critiques advocate for a more nuanced and compassionate approach to psychiatry, one that recognizes the importance of individual patient stories and the socio-cultural dimensions of mental health.

In this interview, Kleinman explores critical issues facing modern healthcare. He discusses the often-overlooked narrative of patient experiences, critiques the mechanistic approaches that dominate U.S. healthcare, and offers insightful reflections on the global mental health movement.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: Could you tell us about your most influential works—what are illness narratives?

Arthur Kleinman: Everyone who falls ill with a serious illness like heart disease, diabetes, or mental health problems develops a story about their experience of illness. Medical anthropologists make a distinction, where ‘illness’ stands for the experience the person has of symptoms, of seeking help, and of responding to treatment from disease, and ‘disease’ is the way that practitioners, not just biomedical practitioners but alternative and complementary practitioners as well, reconstruct the illness experience in a particular set of categories.

Let me give you an example. You’re short of breath all the time, and the doctor says you have asthma. That’s a reconstruction of your experience of wheezing. It’s a very important reconstruction because it usually leads to an effective intervention like medication, but in that reconstruction, something gets stripped away, and that is the human aspect of the illness experience, the way it affects you as a human being. When you’re being treated for asthma, that fear you have of the shortness of breath, that anxiety over the wheezing, that difficulty that you have in doing your work, or in having conjugal relations with a spouse, or in being able to supervise your children—all those things disappear and the disease becomes a very limited pathophysiological focus that allows for a technical intervention— something gets lost in that transformation.

The practitioner doesn’t pay sufficient attention to who you are as a person, to what the illness is doing to you, and the constraints you might find in following the treatments. Think of an Asian or Asian-American individual who has high blood pressure. They use soy sauce for cooking, which is 16% salt. In hypertension, it’s critical that you limit your salt intake. Just being Asian-American and eating a diet that is informed by the wonderful traditions in Korea, China, and Japan means that either the whole family changes its orientation to food or the person with hypertension is going to be, in a sense, left out. Does that get taken into account by doctors? Generally, not.

Every one of us has specific examples where a treatment interferes with certain aspects of our lives. The practitioner needs to take those aspects into account because in order to follow the medical regimen, we have to be able to have a life.

Just think of the consequences of taking certain mental health medications, such as antidepressants, that are associated with weight gain. Serious weight gain can be the difference between feeling good or bad about yourself. If you feel bad about yourself, that’s not going to assist in getting rid of depression. It’s likely to make it more difficult to get rid of. Being aware of the psychosocial context in which the patient lives is critical to care.

In theory, psychotherapists should consider the context. But do they? They don’t sufficiently. In medicine, the tendency is to forget about the person and their context and just treat you as the disease. In the mental health field, the tendency is to focus on you as an individual and forget that you live in a family, in a community, and work with others. Leaving out that social context can be the difference between effective and ineffective treatment.

Dhar: I was thinking about sexual dysfunction as one of the side effects of antidepressants. When you’re already feeling low, and the one thing that allowed you intimacy with your significant other also breaks down, creating further isolation, that cannot help. You write that the way we train physicians, including psychiatrists, makes them blind to patients’ and their families’ illness narratives. There is something in the culture of medicine. What is the cost to the patient and to the physician?

Kleinman: We have at least eight studies that show that if you compare first-year and fourth-year medical students’ interviewing skills, in paying attention to the person and the social context, first-year medical students are actually better. That’s deeply disturbing.

The system of healthcare today in America is toxic to good care. It produces burnout. Physicians are expected to give care. But the structures we have—the system of caregiving, the enormous importance of finance in caregiving, the idea that patients are profit centers—undermine care. It ties the hands of the practitioner behind her back, even if she wants to get the illness narrative.

“That is a system of care built around the idea of efficiency, not of care. All these statements that are made in the mental health field about quality of care are frankly bullshit. We do not measure quality. We measure institutional efficiency.”

To measure care, you would have to measure the quality of relationships, communication, clinical judgment, treatment decision-making, and patient’s feelings about following medical advice or not. All of that would be in quality of care. We measure satisfaction—are you satisfied or not? But these are meaningless questions.

Psychiatrists have been turned into prescribers of medication. That is the role that the healthcare system forces them into. Healthcare insurers would much rather pay social workers to do psychotherapy than they would a clinical psychologist or psychiatrist because social workers are a lot cheaper in providing care. The evidence is that they’re no different in terms of the outcome of care.

The most important findings come from global mental health studies in countries like India. Vikram Patel and Paul Farmer have shown that you can train local people who have limited education to deliver psychotherapy, and their outcomes can be indistinguishable from those of psychologists and psychiatrists. That is the future of mental health: that psychotherapy works as effectively as medication. That’s number one. Two, it does not have to be delivered by a psychiatrist or psychologist.

We want PhD psychologists and MD psychiatrists to focus on patients who are recalcitrant to ordinary treatment. These patients require sophistication in the use of medications, psychotherapies, etc. There’s a radical re-visioning of the mental healthcare system—psychiatrists and psychologists will not be the dominating forms of expertise in the future.

The social structures and culture of medicine and psychology are as important as the social structures and culture of patients and families. We’ve never combined them in that way, but now we must; otherwise, we’re facing a disaster.

I wrote about my care for my late wife, who died of early-onset Alzheimer’s disease. We’re losing caregiving in the healthcare system, and we are seeing powerful forces in society make it much more difficult even to have care in the American family. This is very gendered, as you know, as a woman. Men like to talk about care, but women actually do it.

Dhar: The medical system is not very efficient. I spent 10 years in the U.S., and one of the primary reasons I moved was the constant existential anxiety of not having healthcare despite having health insurance. Sometimes, the way doctors and patients explain what is happening is different. The doctor might focus on a chemical imbalance, and the patient might say it’s an ancestral course. You wrote about these types of conflicts in how patients and psychiatrists explained their problems. But in today’s world with pervasive social media, things like ADHD and Dissociative Identity Disorder are peddled out as identities. There is a looping effect here of how biomedical narratives are now changing people’s experience of themselves and the way they experience distress. How do we work with people when our illness narratives have shifted so much when a patient might enter the office saying, “I am ADHD”?

Kleinman: It has to do with the development of an educated middle class globally. The middle class has come to understand genetics, biotechnology, and pharmaceuticals and is better educated in science and technology. It comes to the physician not just with the illness experience but also with their own views of the disease.

Ideally, this could be a way that physicians and patients can be more collaborative. However, in fact, instead of being more collaborative, it often leads to further tension, where patients will insist on a certain kind of biomedical understanding. The practitioner may disagree with that. For example, the stigma of depression and anxiety has receded so much amongst the global middle class that it’s now possible in China to talk to young people about depression and anxiety. But that doesn’t necessarily always work out for the good.

Patients may insist on a particular diagnosis. They may insist on that diagnosis because it is associated with a medication they want or because they feel that that diagnosis is less stigmatizing than another. Some of this is very good.

I organized a report by the World Bank in 2016 called “Out of the Shadows” about mental health. My idea was to show partly that depression was a very common problem all over the world. On the other hand, it’s equally important to recognize that about 50% of cases of depression do not require any kind of intervention that is professional. They respond to things like a confiding relationship, improving people’s social circumstances, getting a better job, having improvement in a conjugal relationship, dealing with sexual problems, dealing with the environment in which people are working and living, diet, exercise—all those things contribute to half of people with depression getting better. It’s the other half that don’t get better who require the medical interventions.

I’m suggesting that a large number of mental health problems are responsive to improvements in society, families, schools, and workplaces, and those are the kinds of social interventions that are needed. Mental health is not just a medical matter. It has to do with education, the workplace, families, and communities.

Over the next 30 years we’re going to see major efforts to get profit-making out of health and mental healthcare. The mental health domain is foundationally organized on care, not profit. The language required is not an economic language of efficiency but a human language of care. I think that’s going to increasingly lead to change in the future. We should prepare ourselves for changes.

I can point to one very important one. While the most common mental health problems are being destigmatized, that has not happened with psychotic disorders. With schizophrenia and even bipolar, when it produces mania and psychosis, the stigma globally is still strong.

Dhar: Partly, this is because we have traditionally had a very pessimistic outlook towards schizophrenia—there is no coming back. These understandings have been challenged, like Robin Murray’s recent writings. In my work in rural India, the experience of hearing voices was very common, and people were open to talking about it. They had their own understanding of why this would happen. But if I coupled it up with biomedical terminology like “psychosis” and “schizophrenia”, immediately there is fear and stigma.

Kleinman: We have an anthropologist who has done magnificent work in this area, Tanya Luhrmann. (See prior interview with Mad in America.)

Tanya’s work is extraordinarily important. She shows that hearing voices is so common in certain settings that even the term hallucination is the wrong term because hallucination means an abnormality in perception. In the early days of bereavement for a loved one, many people believe they heard the voice of the person who just died or actually saw that person. Those illusions are common enough to be part of the normal experience. What is bereavement anyway? It is about the caring of memories, and you make those memories vivid by hearing voices and by seeing things.

This is the lack of utility of a language of pathology. Where a language of pathology is useful, use it; where it’s not useful, don’t use it. Families with adolescents who are on the spectrum of autism try very hard to normalize that experience. They run up against efforts to medicalize it.

We’ve seen developments in this regard among most First Nation peoples. There are efforts to get rid of the language of pathology because it makes everything look bad, wrong, and broken, and to use more traditional languages that have the possibility for uplifting, reform, and a more positive view of people.

Dhar: Research suggests that in non-western cultures, among ethnic minorities, and also among people from lower socioeconomic sections in the U.S., there is a tendency to have your experiences in the body—somatize your experiences. For e.g., among these groups, depression presents via physical symptoms like backache or burning sensation, but in more affluent or Western societies, it looks like hopelessness and existential dread and the experience is psychological.

My question is: given that we diagnose depression based on how symptoms present, can we even call it depression if the presentation is drastically different? If I use a behavioral checklist to diagnose depression, and the behaviors are completely different in another culture, where is the evidence that there is some underlying true depression, especially in the absence of biological markers?

Kleinman: That’s a terrific point. Human beings have a psychophysiological holism. There’s no separation of mind and body in human experience. When you’re having problems that we call depression or anxiety, you’re having physical symptoms as well as psychological symptoms. What distinguishes societies is not necessarily that somatization is more common in the non-Western world and psychologization is in the Western world, it’s that amongst the educated middle class all over the world, they’re being socialized into a global culture which increasingly is being psychologized, is developing sophistication and depth in the use of psychological terms in reference to their own experience.

If you go from the upper middle class to the working class, you’ll see a difference independent of race and culture that has to do with our forms of education. By the way, that psychological language is not necessarily “right.” It’s picking up on one side of the symptoms, the psychological, but not paying attention to the somatic.

Chronic fatigue syndromes have a long history that gets punctuated by the development of the term neurasthenia in 1869. That term spread all over the world because it suggested that the problem was in the nerves, not in the psyche, and therefore, less stigma was attached to it. But nowadays, as people have become more and more psychologized, that term has gotten thrown out, and people are using psychological terminology. There’s no evidence that if you have depression and use psychological terminology, your outcome will be better than if you have depression and use physical terminology.

You have a psychophysiological experience, and it’s integrated. It’s only the way we think about things that separates that out. Where do those thoughts come from? From the way biomedicine separated out the mind and the body in the past.

Dhar: You’ve talked about the importance of global mental health—the need to take mental health services to Low- and Middle-Income Countries (LMICs). One of its proponents, Vikram Patel, has written that some of the problems in these countries are 1) primary care physicians don’t recognize common mental disorders, 2) enough screening is not done in primary care settings, and 3) there isn’t adequate treatment, both antidepressants and psychosocial treatment.

But in the global north itself, there are emerging concerns about all of these things. For example, Allen Frances has repeatedly attributed overdiagnosis and misdiagnosis to primary care settings. Screening instruments are under scrutiny for multiple reasons, such as leading to overdiagnosis, not producing good outcomes for patients, and being developed by pharmaceutical companies that gain from overdiagnosis. Regarding treatments, you have yourself written that psycho-pharmaceuticals have been found to be a lot less effective and have severe adverse effects.

First, why should we introduce things we are already beginning to critique and problematize in the U.S., the UK, and Canada into the Global South?

Second, at an international conference recently, I found many psychiatrists talking about structural determinants of mental health, such as poverty, violence, etc., and the importance of access to care for people in poorer countries. But when I asked, “What care?” a speaker mumbled something about antidepressants. How is farmer suicide, which is caused by predatory money lending policies, neoliberalism, etc., treated by antidepressants? My worry is that the global mental health movement, despite its promises of paying attention to context and systems, is getting co-opted.

Kleinman: They will get co-opted. That’s probably the most important word that you used because the political economy of healthcare is part of the problem—a big part as you’ve identified.

Aging citizens of Japan, Denmark, Finland, Germany, Sweden, and Norway have access to home health aides. In the United States, very few people do because we don’t have long-term care insurance.

There is an attempt by the Chinese to provide the rural poor elderly with long-term care insurance. Insurance for mental health care generally is extremely important. Vikram Patel’s work is appropriate for the United States too, not just Goa. Some states are using community healthcare workers to follow up on just the questions that you raised.

However, I do think that one size doesn’t fit all. In China, one problem is that the primary care system is not functioning. Having a functional primary care system will be a game-changer for the mental healthcare system, but it will have problems, probably the overuse and misuse of antidepressants, etc.

But I think you said it beautifully. The idea that the West has the answers and the rest get the solutions from the West—that’s gone for good. That’s part of the colonization of the mind.

We engage with China and India as equals; we’re all in this together. A solution in India may be a solution in the United States. I don’t want to see the names of Western researchers as authors of papers on global mental health because that is still colonization. I want to see the names of our Indian, Chinese, and African colleagues. I want to see a much more collaborative kind of care.

***

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The post Context and Care vs. Isolate and Control: An Interview on the Dilemmas of Global Mental Health with Arthur Kleinman appeared first on Mad In America.

Dr. Gupta’s career began with research on the role of the endocannabinoid system in the pathophysiology of schizophrenia as an academic psychiatrist. Her subsequent scholarship has focused on applying deprescribing, the systematic reduction of unnecessary medications, to psychiatry by rooting it in the principles of recovery-oriented care. She has authored several peer-reviewed papers on deprescribing and co-authored a book with Rebecca Miller and John Cahill.

She is an active member of two organizations that aim to enhance stakeholder engagement in psychiatric research. She is also a part of the editorial board of the Community Mental Health Journal. Currently, she is working on creating educational resources to help people discontinue psychiatric medications and gathering information on the knowledge and opinions of psychiatrists regarding the discontinuation of such drugs.

In this interview, we discuss deprescribing from psychiatric drugs, the difficult decisions faced by patients, the importance of psychosocial support during withdrawal, and how deprescribing is central to recovery-oriented practices such as shared decision and patient choice. We will also tackle the complex issue of whether the recurrence of symptoms once a drug is tapered is a mark of relapse or withdrawal caused by the psychiatric medication.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: What is deprescribing in psychiatry?

Swapnil Gupta: Deprescribing was initially defined in Geriatric Medicine and Palliative Care Medicine—older people get more diagnoses and more medications. Deprescribing is a way of removing drugs when their benefits do not outweigh the risks, either at the current time or at the future time. It is reducing the dose of these medications or slowly reducing them to a stop. This is done considering the patient’s medical status and values—do they want to take the meds or not? Are there other ways they can handle the same condition? How are they functioning in that environment?

Dhar: I once covered an article on inappropriate medication use and polypharmacy among geriatric patients, with terrifying statistics about adverse drug reactions and mortality. Tell us why and when you saw a need for deprescribing in psychiatry.

Gupta: I first worked as a psychiatrist in India. I moved to the United States in 2009, and when I saw the medication lists, I was quite surprised that the medical lists were so long. From the perspective of standard guidelines, the medication combinations didn’t make any sense. Some combinations just seemed overtly harmful. So, I was cleaning up medication regimes right from the beginning.

During my time as an attending, I realized that we needed a name for a particular intervention to discuss it, debate it, and potentially oppose it. Along with my colleagues John Cahill and Rebecca Miller at Yale, we devised the term “deprescribing” to systemize this intervention in Psychiatry. We chose this term because it has already been used in geriatric medicine.

I hope that in a few years, we won’t need it anymore because everyone is prescribing more carefully.

Dhar: How do you gauge when a patient needs to be tapered off their medication? Maybe their prescription still benefits them, or the risk is too high.

Gupta: Many factors go into it. If I have started the medication, then I ask the patient: how long do you envision being on it? So, this conversation of reducing or stopping the medication begins at the time of starting the medication. If I’m treating depression, and I’m offering the person an antidepressant, I very clearly ask them, “How long do you think you might be on it?”

If it’s a patient who’s been in the system, they’re passed on to me and are on high doses of antipsychotics, then the first thing is to review the records. There might be instances where this person’s doctor tried to taper their medicines, which didn’t work. Or they tried to taper the medication in an uncoordinated and abrupt fashion, like they halved the dose of the antipsychotic, which, as we all know now, is completely inappropriate and a recipe for disaster.

If a careful taper in the past led to a very distressing outcome like hospitalization, if the patient is absolutely not interested in changing their medications, then we leave it at that.

But if the patient’s life circumstances have changed, they feel more comfortable, have a good living space, good relationships, and people who can support them in this process of withdrawal, then we move ahead. The most important thing is: how does the patient respond to the suggestion of deprescribing?

Dhar: How common is it for a patient to come forward and initiate a conversation, “I would like to stop taking my meds,” as opposed to their physician initiating it?

Gupta: Very few patients will say, “I want to stop my medicines” because the reputation is that once you’re on a psych med, you have to be on it forever, and if you’re tapered off your medicine, your psychiatrist is going to get mad and not see you anymore, or call the police, or have you put into the hospital. So, very understandably, what I think most patients do is they tell their psychiatrist, “Yeah, I’m taking the medicine,” but they’re actually not. And I completely understand why someone would do that. If I were taking prescribed medications and there was the risk of me being hospitalized if I didn’t take them, I would lie, too.

For the patient to feel comfortable bringing up that question of tapering meds or wanting to stop them, the relationship has to be good. Both parties have to be transparent, and the doctor has to demonstrate that they care about the patient more than the fact that the patient is taking the medication.

Dhar: When it comes to polypharmacy (use of multiple meds) in psychiatry, what are some of the adverse effects you have observed in patients?

Gupta: Polypharmacy is when deprescribing is absolutely needed! For instance, you give somebody a Benzodiazepine like Xanax or Klonopin, along with a medication for nightmares, like Prazosin. Now, Prazosin lowers your blood pressure, and Xanax and Klonopin can cause dizziness and incoordination. Imagine a 60-year-old—they finish dinner, take their Prazosin or their Xanax and Klonopin, and they’re watching TV. They get off their couch and fall because their blood pressure has gone down and their coordination is messed up. Plus, if you’ve been taking antipsychotics for a long time, that reduces your bone density, increasing the chance of having a fracture. You end up in rehab for eight weeks after surgery.

There is an antifungal drug called Fluconazole. And everyone knows Clozapine, an antipsychotic, comes with a huge number of side effects. Both Fluconazole and Clozapine cause problems in the heart rhythm. People should not be taking them together. I had a case where my patient was given Fluconazole, I panicked, ordered an EKG, and the heart rhythm abnormalities were pretty significant. Polypharmacy is a huge issue.

There are some small things we can do. For example, people are given Risperidone and then Cogentin or Benztropine to manage the side effects of Risperidone. There’s a good chance that if you drop the dose of Risperidone by 1 or 2 milligrams, they’re not going to need the Cogentin, and Cogentin causes a lot of side effects on its own. So, there are things psychiatrists can pay attention to to reduce the side effects burden and improve quality of life.

Dhar: Deprescribing or discontinuation of psychiatric meds is not an easy conversation. What are usually the common reactions you see from patients and their families?

Gupta: I never open the conversation with stopping meds. It’s an open question like, “Tell me about these medications. How they’re working out for you? Are they causing any problems?”

I have to make clear that 1) I’m not going to change medications without your input or impose my will, and 2) I’m just trying to understand how you feel about these meds. I need to emphasize that I’m not worried about whether you’re taking the medications or not. I’m worried about whether you’re feeling okay or not.

Some patients say, “I’m feeling well. I don’t even want to talk about this. Just refill my prescription,” which is entirely understandable because often these are people who have been either brutalized by the police or have had horrible experiences on inpatient psychiatric units, they don’t want to end up back there. They are afraid of getting angry with family members and mistreating their family. They may have spouses who say if you don’t take your meds, I’m leaving you.

This one patient, the last time she had stopped her medicine, she had punched her mother. So, she was terrified and said, “I don’t want to stop my medicine,” and she was on a hard-to-understand regimen of medicines, but that worked for her; any change would make her anxious.

Others see the conversation as the beginning of a transparent relationship. I’ll say, “Okay, what do you think about the pink pill that you take every night?” and the patient says, “Oh, I haven’t taken that for six months.” Deprescribing opens the door to building a better relationship with the patient.

Dhar: In the process of reducing or stopping psychiatric medication, what is the importance of ‘right timing’ and ‘psychosocial support’?

Gupta: The timing is extremely important. I work at a site with many trainees—a substantial number of patients doctors change every year in June and July. So, that’s not a good time to change medications. One reason is that the transfer of information might not be complete, and the patient is in the process of establishing a relationship with a new doctor.

There are so many factors that make it bad timing for the patient—instability in living situation, relationship troubles, if they’ve recently lost a beloved pet or family member and they’re depressed about it, losing a person who was important to them like a therapist, if they’re physically sick, etc.

That said, I don’t think there’s ever a perfect time to do it. So, if a combination is dangerous or contraindicated, you must talk with the patient.

Regarding psychosocial interventions, there’s some pretty clear-cut evidence for Mindfulness-Based CBT and the prevention of the recurrence of depressive episodes. Connect the person with a good therapist if you’re going to taper off the antidepressant. Peer support is critical—connecting the person to resources where people talk about withdrawal symptoms and strategies for safe tapering.

One of the most important things while tapering drugs is to reassure the patient that the withdrawal symptoms they are experiencing don’t mean they’re crazy. For example, brain zaps—it’s hard to put that experience into words. I have patients moving their hands in the air, trying to explain to me what’s happening in their bodies, but they’re not quite able to.

If they connect with someone with the same experience, then two people know what the other is talking about. That’s a big relief—I’m not the only person in the world to whom this is happening, and it’s the medication doing this to me; there’s nothing else that’s terribly wrong with me.

We know so little about the process. There’s a large consumer community and tapering community, and it’s important to learn from them to figure out which strategies work.

We also try lifestyle changes and things like CBT for insomnia, for example, if you’re tapering off Seroquel. Unfortunately, Seroquel is prescribed just for sleep on many occasions. That’s an egregious thing to do. So, while tapering off the Seroquel, we offer the patient CBT for insomnia groups—a simple, harmless intervention that can replace a fairly problematic drug.

Dhar: Here is a difficult one—withdrawal versus relapse—which one is it when a patient’s symptoms recur after reducing or stopping a drug like antidepressant or antipsychotic? We used to think that discontinuation of antipsychotics instantly causes relapse. But there is more and more evidence around the withdrawal effects of stopping or reducing antipsychotics and dopamine super sensitivity—which looks like relapse but isn’t. How do we know what it is? Is a patient relapsing into some original condition, or is this withdrawal caused by reducing the drug? When people think about withdrawal, they think of cocaine and not medicines.

Gupta: For antidepressants, the withdrawal syndrome is a little clearer because there are a lot of physical symptoms that pop up, like brain zaps, feeling tired, feeling fatigued, in addition to some very prominent emotional symptoms like crying spells or just feeling very irritable or getting angry, even suicidal thoughts or wanting to kill yourself—so all these things come up. But I think the physical component is really prominent. It’s pretty clear that this is because of the antidepressant withdrawal.

The surest way to establish that is that as time passes, the withdrawal symptoms will hopefully slowly dwindle and disappear at some point. A small percentage of individuals will have protracted withdrawal symptoms. Some are going to taper off antidepressants without any problems. Some people will have symptoms for four to six weeks.

As far as antipsychotics go, it’s really hard to tell. I think when people abruptly stop medicines like Clozapine, the symptom appears so quickly that it’s more likely to be a withdrawal syndrome that appears first. It’s possible that as time goes past, the withdrawal syndrome subsides, and some underlying syndrome, the primary illness emerges. That’s a possibility.

There is a chance that as the withdrawal syndrome subsides, nothing will emerge from under that. But by that time, the person has already been reinstated on the antipsychotic because the withdrawal itself is so disruptive.

There are some physical symptoms of antipsychotic withdrawal as well—a series of movement disorders like generalized fasciculations all over the body that can last four to six weeks, worsening of the tardive dyskinesia, dystonia that acutely appears as you’re tapering the medicine, stiffness, and tremors can get acutely worse.

Many antipsychotics are very powerful antiemetics or drugs that prevent vomiting. So, patients can feel nauseated on discontinuation. Patients can have diarrhea or sweat too much, or have a runny nose.

Small studies and case reports are done in gastrointestinal disorder clinics where patients are given drugs to prevent vomiting for long periods of time. And when these drugs are abruptly withdrawn, patients can have transient psychotic symptoms. And these are patients who have never had psychotic symptoms before.

Dhar: Could you tell our listeners a little bit about dopamine supersensitivity?

Gupta: Long-term blockade of the Dopamine receptors, which is what antipsychotics do, causes the Dopamine receptors to increase in number. There’s not enough Dopamine coming through, so the number of receptors increases. Then you suddenly remove the Dopamine blockade (stop taking antipsychotics). So, that area of the brain becomes supersensitive to Dopamine. And that’s the mechanism for withdrawal psychosis or withdrawal tardive dyskinesia.

Dhar:  You write that deprescribing aligns with the recovery-oriented approach to mental health. The recovery movement emphasizes patient choice and patient preference. You have written about some very important things like the ‘right to fail’ and the ‘dignity of risk’ and how, for some patients, functional recovery might be more important—Can I keep my job and have a good social relationship—than just removal of symptoms like voice hearing. Tell us more.

Gupta: There are four pillars of the recovery-oriented approach—person-centered care, honoring patient autonomy, fostering hope, and empowerment. Part of person-centered care is shared decision-making as well. Deprescribing is not possible without actually adhering to these pillars. The approach is highly individualized—it’s very person-centered. It’s what works for the patient.

It’s impossible to carry it out without the patients’ okay. I’m respectful that it’s the patient taking the medication, so they know best how it’s affecting their life. Patients are mindful that I’m the person who knows about medication side effects. In a space of mutual respect and understanding, we reach a common goal—it’s also aligned with shared decision-making.

It’s empowering because it tells the patient, “Medication is not the Be-All and End-All of your Well-Being. You have a right to say that you don’t want these medicines”. There’s hope for a medication-free life, unencumbered by side effects.

When we go to the ‘right to fail’ and the ‘dignity of risk,’ that gets unnerving for physicians because we are trained to be cautious. We are taught to minimize risk. To think that I would do something that would increase the chances that this patient could end up in the hospital or could start hearing voices again—For some physicians, it’s just unthinkable. It’s important to expand physician training and have them remember it’s also your job to give the patient a good quality of life and to offer treatments that align with their values and preferences. So, if it’s an informed decision that we are going to taper the Haldol by x milligrams, but there’s a risk that the voices might increase—do we want to take that risk? That conversation needs to be had.

Dhar: Has that happened, patients saying “I am okay with hearing voices as long as I can do these X, Y, Z things.”

Gupta: One typical example—young people who hear voices going to college, and the voices are really well controlled with an antipsychotic. But the problem is that the medication makes them so sleepy they cannot stay awake during class. Then it becomes about a balance between if the voices increase slightly, but they can sit in class.

One patient wanted to taper the meds slightly to see if they could stay awake during class, and it worked out fine. So, we consolidated the dose and moved it to the evening, which really helped this person.

I’ve also had patients who said “I don’t care if I end up in the hospital once a year, I’m not taking this medicine”, which is not an unreasonable choice if you have to take something like Haloperidol or Fluphenazine, which can suck the joy out of your life. And, if you are in the hospital but you know the staff at the hospital, you know that in two weeks you’ll feel better and come out, then that’s not a terrible choice.

Dhar: Lastly, tell us about your recent work on ‘undiagnosing’. What do you mean when you say deprescribing and ‘undiagnosing’ are two sides of the same coin?

Gupta: More recently, I had some interest in ‘undiagnosing’ because in the clinic where I work, there are lots of patients who have a lot of emotional ups and downs, and when they get very stressed, they have transient symptoms that amount to psychosis. Invariably, all these patients get diagnosed with schizoaffective disorder, and they get loaded up with antipsychotics.

There has to be a process of removing this diagnosis from their health record so they don’t get labeled as schizoaffective right away and they don’t get dumped with all these antipsychotics.

‘Undiagnosing” has become a thing in Geriatric and other branches of medicine where people feel that to effectively taper off and stop medications, these diagnoses should be removed from the health record.

Dhar: What does ‘undiagnosing’ say about the nature of diagnosis in the first place, especially in psychiatry?

Gupta: It was a very important teaching moment for me when my department chair, who had researched schizophrenia for 30 years, walked into the room and said, “You know, some people hear voices, some people do have negative symptoms, some people do appear quite disorganized—I think schizophrenia might exist.”

These are all constructs. They’re tools for helping people improve their lives. And when the tool does not feel relevant anymore, we should abandon it and move on to another tool, otherwise it becomes a burden.

I have a young patient in his 30s who hears voices almost constantly, and he deals with it—he lives his life, has a full-time job, likes the work he does, and has children—he lives a full life by all conventional standards. According to the textbook, he would meet the diagnosis of schizophrenia and be loaded up on antipsychotics, but what purpose is that going to serve?

For another person, that diagnosis and treatment might serve a purpose. But this person is dealing with the voices, and he’s happy living his life the way he’s living it. So, in his case, this tool of psychiatric diagnosis and psychiatric medications are just not useful.

***

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The post Deprescribing Psychiatric Drugs to Reduce Harms and Empower Patients: Interview with Psychiatrist Swapnil Gupta appeared first on Mad In America.

He is known for his use of sharp humor, which can be seen in his mock documentary about a fictional illness called ‘Motivational Deficiency Disorder.’ He is also a founding member of the international conference Preventing Overdiagnosis and hosts the podcast The Recommended Dose.

Today, we will be discussing something that the speaker refers to as “an assault on being human” – the labeling of everyday life struggles as disorders and how patient advocacy groups, doctors, medical journalists, and respected academics are often manipulated by a powerful, corporatized healthcare system.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: Can you tell us what is disease marketing or disease branding?

Ray Moynihan: People are familiar with the way drugs are marketed. An equally important aspect of marketing is the way conditions and diseases are marketed. For the pharmaceutical industry, the bigger and wider those diseases, the more people who can be diagnosed, and the bigger your markets are.

The marketing of medical conditions has become a key plank of pharmaceutical industry marketing. The relationship between the medical profession, the pharmaceutical industry, and the patient movements has resulted in a harmful convergence of interests. This has led to the expansion of medical diseases, whereby more and more aspects of ordinary life are being defined as symptoms or signs of illness.

Dhar: Tell me about your reason for getting into disease marketing and branding.

Moynihan: It happened by accident. I was appointed as a national medical science reporter at a national TV current affairs program in Australia in the 1990s. I started getting all the press releases from the vested interests within the world of medicine and realized that there was sort of subterranean marketing going on.

Drug companies weren’t just selling pills. They were selling the diseases that would define the markets for those pills. I had a conversation with one of the most sophisticated drug company marketing people in Australia. She explicitly told me that what was very, very, very important was preparing the market before a new drug was launched. This applies in the mental illness world and everywhere in medicine. Helping widen the definitions of disease is a key part of marketing those pharmaceutical products.

I started writing books. My first book was called ‘Too Much Medicine.’ I got a Harkness Fellowship and went to Harvard to study this more. The stories just kept coming.

Dhar: Is this what inspired you to create the “documentary” for ‘Motivational Deficiency Disorder’ and the April Fool piece in BMJ along with it? What was that about?

Moynihan: That’s exactly right. Because I was witnessing so much disease mongering—the creation and manufacturing of these broad new definitions of disease—and because I was talking to critics within the medical establishment as well, I started to write for the British Medical Journal.

We launched a campaign about the problem of ‘Too Much Medicine’ 20 years ago that’s continued. There was concern among many well-informed senior doctors, researchers, and scientists around the world, and among the public as well. It struck me and my colleagues as a fun thing to create our own disease using all those very obvious marketing strategies.

I can’t remember exactly what the prevalence was, but I think it was one in three or one in five. Whenever you hear “one in three or one in five people suffer from something,” you should feel skeptical because you’re dealing with marketing, not science. I should credit Alan Cassels, who I co-wrote Selling Sickness with this too. He came up with an early version of ‘Motivational Deficiency Disorder.’ I and other colleagues created this little video. It’s called ‘The New Epidemic,’ and it is quite funny.

We talked about laziness—“all my life, people have called me lazy, but now we know I was suffering from Motivational Deficiency Disorder.” We created a drug to treat it called Strival-PH, developed screening tests, and found that, of course, there were genetic markers for ‘Motivational Deficiency Disorder.’ We discovered that the prevalence just got larger and larger.

When we redefined it, we broadened the definition so that more people could benefit from the treatment. It was a fun thing to do, and we launched it in the British Medical Journal on April 1^st, 2006.

Dhar: As hilarious as this is, the terrifying part is that I have seen this happen in real life. A recent real-life example of this kind of advertising was for binge-eating disorder, and Monica Seles was the celebrity they used. Did people believe the existence of this “disease,” motivational deficiency disorder?

Moynihan: When we launched it on April the 1^st, we put out a press release. A lot of journalists around the world took it seriously. We got a call from the Wall Street Journal, but my colleague didn’t play along. He immediately admitted to the Wall Street Journal that this was a joke, so they never pursued it. It’s possible that the Wall Street Journal journalist knew it was a joke.

Sadly, or perhaps fortuitously, one newspaper in New Zealand did take the thing seriously and put it on their front page, and so laziness was the sign of a medical condition called Motivational Deficiency Disorder in this big story. When they discovered that it was an April Fool’s Day joke, they were unhappy. I’m not sure they’ve ever reported on the BMJ ever again. Humor can be so powerful.

It’s important to say that when we’re talking about creating conditions, we’re not in any way trying to demean the genuine suffering of people. There are real conditions. There are real medications that offer enormous benefits for millions of people, but there is absolutely no doubt in the world that we have extended boundaries too much. We are treating people who don’t need treatment, and who won’t benefit from treatment, and we are promoting drugs that will ultimately cause more harm than good.

Dhar: This reminds me of Nick Haslam’s work on Concept Creep, how concepts in psychology have been broadening, from what constitutes bullying to abuse; it’s happening in popular discourse and then contributes to the broadening of diagnoses and then loops back into popular discourse.

Moynihan: That is fascinating—the other word that we use to describe this process is ‘diagnosis creep’— diagnoses just creeping outwards and getting broader.

Almost universally, whenever a body of experts gets together to review the definitions of a condition, as they do with high blood pressure, Type 2 Diabetes, depression, and social anxiety disorder, almost inevitably, they will widen the definitions.

I think this is a serious problem. It’s a serious assault on what it means to be human.

Dhar: ‘In Selling Sickness,’ you write that pharmaceutical companies influence people’s minds through fear. You give multiple strategies and examples, such as depression, ADHD, and female sexual dysfunction. One of these strategies is directly influencing doctors. How are diseases, not drugs, marketed to doctors?

Moynihan: It is this multi-layered marketing strategy that wraps medical and healthcare professionals in a world of marketing, from the cradle to the grave. Medical students are exposed to pharmaceutical marketing when they attend drug company-sponsored meetings, conferences, and parties. Then, the doctors graduate, and much of the continuing medical education they receive is sponsored by pharmaceutical interests.

Scientific conferences that doctors go to and journals that they read are predominantly funded by pharmaceutical companies. Some doctors are still seeing drug reps. In the age of the internet and social media, there are other numbers of ways.

It’s about framing human misery as the signs of mental illness, framing aging as a condition of disease.

I’ve stopped going to those scientific conferences because of the smell—metaphorically—that stench of corruption. The first few times I went to scientific conferences sponsored by drug companies where the audience was doctors, I could not believe what I saw. These professionals were acting like children. They were lining up to receive tiny shiny toys from drug company stands! The crassness, the crudity of some of these marketing strategies is phenomenal. This is where the prescribing doctor, the psychiatrists, get their information!

There was a psychiatric conference that absolutely astounded and horrified me. The sponsors were all the big global drug companies, Pfizer, Merck, Roche, etc. The guy speaking had organized the conference. When he gave a short talk about contemporary treatments for depression, he did the most extraordinary product placement I have ever seen. Every one of those sponsors got a moment where their latest antidepressant was given the limelight. This was dressed up as a scientific talk from a leading psychiatrist in Australia, and it was the most shocking, crude marketing I had ever seen.

Dhar: I have wondered the same—how can the clinicians not see it? They see all these pharma banners at a conference, the expensive lunches laid next to pharma talks. Eric Turner, who worked for the FDA, talked about that—why are we not skeptical?

Moynihan: A lot of clinicians believe that they are immune from that influence, but the evidence suggests otherwise. We have found that the impacts of pharmaceutical marketing are effective.

We know that doctors who attend sponsored meetings, subsequently prescribe more of those products. The problem here is not that people are prescribing drugs but that those drugs are being overprescribed. They carry a range of side effects, and for some people, those side effects outweigh the benefits.

A rational medical system would organize the education of their doctors differently. We are seeing that. There are many doctors and doctors’ groups that have acknowledged this as a problem and are moving away to seek independent information and forms of evidence.

The Norwegian Medical Association said that to receive ongoing professional medical education points, you can’t go to an industry-sponsored gathering. You will get them if you go to independent medical education.

Dhar: While writing about influencing doctors directly, you gave the example of depression, not selling antidepressants but selling this idea of depression as a simple chemical imbalance. You wrote that the serotonin hypothesis is debated, outdated, and simplistic. Tell us more.

Moynihan: In Selling Sickness, we wrote about a drug rep who spent his life just taking doughnuts to doctors. Part of what the drug reps are selling is that over-simplistic chemical imbalance narrative. I’m a journalist and researcher. I’m not a neurobiologist, so to really drill into that issue, you should talk to them. But that narrow explanation of depression is overly simplistic; it is outdated.

I’m sure for some people, those neurotransmitters have a role, of course. But everyone knows that there are so many factors that produce the distress we describe as these medical conditions. It is crucial for drug companies to shape the narrative about drug effectiveness by sponsoring medical education and scientific conferences featuring key opinion leaders funded by the companies.

Many prescribing doctors learn about the chemical imbalance theory from senior respected specialists who often are on the payroll of the company.

Dhar: In the U.S., before going to the doctor, I check the government database for how much pharma money they are receiving.

Moynihan: It’s called the OpenPayments website. It’s run by the federal government in the U.S. It’s well-funded, and it’s beautifully put together. It’s the result of the Sunshine Act—all the drug companies and device makers have to reveal exactly how much they paid to every single medical professional and their name.

In 2022, drug and device makers paid 20 billion Australian dollars to U.S. healthcare professionals! A lot was for industry-funded research. There are huge questions about industry-funded research. Part of those payments is to pay these key opinion leaders, these senior specialists, who then educate their peers and their colleagues. Some of that money is just close to bribery.

Dhar: Evidence suggests that industry-funded research tends to produce results that are pro-industry. You said that as a journalist, you don’t have the expertise to speak about neurobiology. But as a journalist, you do see patterns, and one interesting pattern for psychiatric disorders in your book was the prevalence rate changes going higher.

The other pattern across disorders was that any debate and controversy in the field is smoothed out by key opinion leaders, like the debates about the serotonin hypothesis of depression.

Moynihan: The more you learn about science, the more uncertain it becomes. If someone paints a picture of absolute certainty around healthcare decisions or treatment options, that is a red flag because medical science is incredibly uncertain.

We investigated social anxiety disorder. We were able to track almost in real time the launch and marketing of that relatively new condition. The PR companies that worked with the drug companies won awards for their work in helping to reposition that condition, reframing shyness as a symptom of a serious psychiatric condition that required drug treatment, an extraordinary coup for those companies.

Now, spilling forward 20 years, social anxiety disorder is an uncontroversial part of the medical establishment. But when you drill into the history, prevalence rates tend to get larger rather than smaller. There is this blurring of boundaries between ordinary life and medical conditions.

Dhar: Tell me about what is the most egregious or ridiculous passing of a drug by a regulatory body.

Moynihan: There are so many. It’s sad to watch those regulatory bodies become so captured by the very industries they are supposed to be regulating.

I think one of the most egregious examples was a drug called Flibanserin. It was a failed antidepressant that the pharmaceutical industry thought they could use as a drug to treat female sexual dysfunction, something called hypoactive sexual desire disorder. Both of these are incredibly controversial concepts anyway. The attempts to market female sexual dysfunction and desire disorders are one of the most egregious.

Dhar: You wrote a book about it.

Moynihan: It was called Sex, Lies & Pharmaceuticals. To say that one in two women suffer from female sexual dysfunction, it’s the grossest insult, but that is what many medical scientists did in alliance with drug companies. This attempt to medicalize what is obviously widespread sexual dissatisfaction driven by multiple factors that feminists have talked about, to use that distress and dissatisfaction, and turn it into a condition to sell drugs—it was again the most egregious example.

Getting back to the drug, Flibanserin, it kept getting rejected by the FDA because it didn’t work; it caused serious harm. Then, a very smart group of pharmaceutical marketers bought the right to this failed drug. They ran the most extraordinary campaign called Even the Score.

They created a fake grassroots campaign that looked like a feminist campaign to even the score—the FDA had approved sexual dysfunction drugs for men but none for women, so this was not fair. The trouble was the drug didn’t work and had adverse effects. This campaign was successful, they recruited senior feminist organizations, but it was hugely controversial. Other feminist groups were outraged by this. It came before an advisory committee that passed it.

That drug is so awful that even the best marketers were unable to create large sales. That is a credit to the women of the U.S. who were able to see through the marketing of both the condition and the drug.

Dhar: It was marketed as female Viagra, but unlike Viagra, you have to take it every day, and you can’t drink, among other restrictions. When they were trying to study the effects of the drug with alcohol, they tested it on only men!

This brings us to patient advocacy groups, which look so good on paper. They are ground-level movements, but often these groups that inform patients and say they advocate for patients, are funded massively by drug and device manufacturing companies. They tend to provide information that puts these companies in a positive light.

Can you tell us more, especially using the case of ADHD which you wrote about in the book?

Moynihan: This is a huge problem. Drug company marketing has broadened from just targeting doctors to also targeting patient groups. A study looked at patient advocacy groups in a certain country and found that 60% of them received some form of pharmaceutical company funding.

With ADHD, there was a big patient group called CHADD. It was central to the early marketing of ADD as a widespread condition. There is enough evidence that ADHD and ADD are being diagnosed in people with very mild problems. There’s strong evidence from large observational studies that if you are the youngest child in a classroom, you are more likely to be diagnosed. That is a classic red flag for over-diagnosis.

The patient groups form alliances with the drug companies and relevant doctor groups to form these powerful coalitions of interest that say that the prevalence of this condition is as big as possible.

The consumer groups, the advocacy groups that don’t take industry money, have a more evidence-informed and reliable approach. In the U.S., you have a non-industry-funded mega-consumer group called Consumer Reports. They don’t take a cent of drug company money. You can also look at the Cochrane Reviews of the evidence about drugs. I wouldn’t look at industry-funded patient group websites because the chances are I’m going to be misled.

Dhar: Coming to journalism, what is your most memorable interview?

Moynihan: When I met that marketing expert 20 years ago and she told me that it’s not just about marketing drugs; it’s about preparing the field, developing awareness of the condition.

The other interview was at the beginning of my career. I sat with a young doctor who had just diagnosed a four-year-old with ADHD and had prescribed amphetamines. We were making a TV documentary at the time about ADHD. That doctor said, “Well yeah, I did diagnose, I did prescribe, but that kid’s not the best example of someone with ADHD; it’s probably quite borderline. I’m not even sure that he really needed the diagnosis or the drug.”

He told me, but not the parent or the child, that. The obscenity of that situation where that child’s narrative was changed forever, possibly unnecessarily, stays with me.

But I’ve also been so encouraged by how much interest there is in this problem within the medical establishment. I helped set up an organization called Preventing Overdiagnosis, which is a global collaboration of scientists, researchers, clinicians, and consumers.

Dhar: We’ve talked about the crimes of medicine, psychiatry in particular. What are the crimes of journalism here? You write that patient advocacy groups would supply the perfect patient for media interviews. What is the responsibility of media and journalism in this whole story?

Moynihan: Does the media have a responsibility here? Absolutely. I’ve worked with colleagues in the media to increase awareness to report better. My first study in NEJM was how media buys drug companies to exaggerate benefits and downplay harm.

There is an enormous receptivity among journalists. But sadly, there are still high-profile journalists directly accepting money from pharma companies in the same way that many senior doctors do. It’s a huge conflict of interest. Too many awards for medical journalism are funded by pharmaceutical companies.

But things are changing. People are developing a healthy skepticism. Until we have corporations in the medical space, we are going to need strong, well-informed civil society and regulatory structures to try and keep the marketing campaigns in check.

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Branding Diseases—How Drug Companies Market Psychiatric Conditions: An Interview with Ray Moynihan appeared first on Mad In America.

Dr. Chaudhary has an impressive record of over 70 publications and several books. Her work challenges mainstream views of parenting, child-rearing, and child health. Given recent debates concerning child research conducted primarily in WEIRD nations (Western Educated Industrialized Rich and Democratic) and subsequently applied universally, her work carries significant relevance.

How we understand and shape the lives of children is crucial to how we perceive suffering, healing, and mental disorders. In this interview, we delve into how global organizations like UNICEF may unintentionally harm those they aim to help, how children raised with multiple caregivers can be misclassified as problematic by psychology, and how our comprehension of families, children, and mothers is severely limited.

Most importantly, we discuss how studying childcare across various cultures can enlighten us about different ways of living, loving, and understanding one of the most vulnerable among us – children. This might allow us to examine our own biases, practices, and narratives more effectively.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: Why are you interested in studying the lives of children and their caregivers?

Nandita Chaudhary: My interest in developmental psychology began during my undergraduate studies. You’re striving to understand the formation of a human being, and we know the significance of an environment that complements, resists, and promotes various aspects of development. Then I got married and had my own children, which solidified my interest — I became curious about their behaviors, alternative possibilities, and how I could excel as a parent to raise my children.

Dhar: When did you realize that what you had studied about children in psychology did not align with what you were observing in India?

Chaudhary: It was a gradual realization. My postgraduate study was designed with an eclectic perspective where we had courses on social anthropology, sociology, physiology… It was this innovative curriculum that aided me in developing the idea that there was much more occurring than what the textbooks suggested.

Dhar: Let’s discuss your work on Attachment Theory. The concept of “Attachment” is omnipresent, especially on social media. Social workers, influencers, clinics, court orders, etc, utilize it. This idea posits that a certain type of parent leads to a specific kind of attachment, which, if flawed, can cause a particular type of abandonment, trauma, or disorder.

Chaudhary: Attachment Theory advocates that the healthy emotional development of a child throughout life is determined by a singular, exclusive, responsive, predictable caregiver.

However, the terms responsive, predictable, exclusive, and consistent are not typically associated with any Indian parent. The expectation for an individual to behave consistently all the time is virtually impossible as it depends on your emotional state and your surroundings.

In our context (Indian context), it heavily depends on your company. This significance of others and the presence of multiple caregivers is a key distinction between what is perceived as a context for healthy development in WEIRD (Western, Educated, Industrialized, Rich, and Democratic) countries and the reality of childcare in the majority world.

No Indian language possesses an equivalent term for ‘Parenting.’ The term is always childcare and nurture, “paalan poshan.” This is profoundly reflective of the concept that the focus is on what is done with the child rather than who does it. Childcare is a verb and allows for the interchangeability that characterizes the care of children.

Dhar: As an example — when we think about predictable and consistent caregiving (promoted by attachment theory) — my 1.5-year-old is not allowed to look at phones, but my response also depends on the context. When I am exhausted or on an airplane, she can have it for a few minutes. When she is around her cousins, it depends on what other children are doing. My response depends on who is around us. People are not constantly predictable or consistent in every situation.

Chaudhary: Absolutely, and the testing of attachment is conducted in a laboratory setting. Those results are then generalized to ordinary life, and people are judged based on that.

The strange situation test, involves the mother leaving the room (lab) and the child being left alone with a stranger. If the child displays separation anxiety and also approaches the mother upon her return, it is viewed as a healthy sign. Firstly, the lab setting is so distinct from the home that it, in itself, is strange.

Also, if the child is accustomed to having other people around, the mother’s departure may not elicit any anxiety. If the child is so intrigued by the toys because she has no toys at home and doesn’t react to the mother’s return, that is interpreted as pathological.

Even in the West, the use of the attachment protocol is highly questionable. When you label a child as disengaged or inadequately attached, it has significant repercussions. As you’ve noted in your work, labeling can be a form of violence.

The lab is a controlled environment which psychologists presume is the ideal way of observing children. However, can you extrapolate from this environment to the home? Developmental psychology has been exceedingly unfair to mothers because it assumes mothers have no other obligations but to respond to their child, who has, in reality, caused substantial disruption in their lives.

Attachment Theory fails to understand the mother’s viewpoint and that she herself requires care, relief, and support. In India, in larger families, it’s commonly said that it’s the mother who needs care. It is traditional to send the mother to her own maternal home for the birth. The idea is not that the child will be cared for, that is taken for granted, but rather that the mother herself needs care.

Dhar: A bias of attachment theory is the assumption that a family system is always a nuclear family — there’s going to be predominantly a mother at home to form an attachment with. But in most parts of the world, there is a constant presence of uncles, aunts, cousins, neighbors, friends, grandparents, strangers, etc.

Regarding the lives of children in other parts of the world — could you tell me about the ‘many by many’ model of childcare you developed with Heidi Keller?

Chaudhary: At one point in my career, we looked at the Hindi word ‘Mamta,’ meaning a mother’s special love for her own child. Its origin is Sanskrit, where the word includes ‘mam,’ which means ‘myself’ and ‘love.’ It’s a word that means both a mother’s love for the child, but also a mother’s love for herself. This ideology promotes that a mother should not be too close to her child.

This directly contradicts Attachment Theory. In fact, if a mother is becoming too close to her child, the relatives will step in to ensure that there are other people who can take over. One may argue it means that the mother is not important, but actually, the idea is that the mother is so important that you need backup. Can you imagine how difficult it is if the child develops separation anxiety and is broken every time the mother leaves? That separation anxiety expresses itself when the mother and the child are the only two people all the time.

When I looked at the “many by many” model, I realized that the presence of others was not to underestimate the mother. The mother herself needs care and support. In India, it is traditional for her and the baby to get daily massages for a few months after giving birth so her body can heal. You get that time to yourself as someone else takes care of the baby. In fact, whenever Indians or even immigrants have kids, they always bring in family support — older people put themselves through enormous difficulty to travel to take care of the baby and mother.

The logic of the ‘many by many’ model is based on the idea of complementary care. What is seen as substitute care, I see it as supplementary care. Adjustments and investments are made in the family to make the child experience many other people, constantly coming and going, even people who don’t like the child, like a jealous aunt. But it’s an important socialization experience of having different kinds of experiences and relationships.

I’m not pitching the Western family against the joint family. I’m arguing even further that all families have evolved from this. In Scandinavian countries, the state acts in that role. The childcare services act as support services for the parents, and it’s a good model. I don’t wish to underestimate any other ideology in childcare, but I don’t want people to pathologize what is familiar to me because I see the value in that.

Dhar: Let’s discuss the dangers of pathologizing something we don’t understand. What are the risks of not understanding these different ways that kids and their caregivers are with each other, these different ways of being, of living, and of loving that exist across the world?

Chaudhary: The biggest example is pathologizing of co-sleeping and feeding the baby with one’s hands (not using utensils). Psychology has tended to over-psychologize practices, but a lot of these options are a result of practical arrangements.

If you are a family with just one room, the mother does not sleep with the child because she psychologically wants to stick to her child. Treating a practical arrangement as a psychological desire to keep your child under your wing is hugely damaging.

I remember a research scholar who went to Canada from New Delhi, and she was attacked with questions. “Oh, you’re an Indian, so you’re still living with your mother?” She said, “I don’t just live with her. I like to sleep in the same bed as my mother.”

You must defend yourself as if you’re some weirdo incapable of managing in this environment. I see that as epistemic violence about people’s way of living that is judged without knowing the significance, the background, the history, even of your own culture because families in Northern America also have not been nuclear families forever. It is a relatively recent phenomenon.

Dhar: These psychological ideas have real consequences. I had to lie to my pediatrician in the US about not co-sleeping with my baby. The norms of society define the kinds of research we do, and there is a lot of new research and guidelines around co-sleeping.

Talking about research, what is the most important ethnographic research people should know about when it comes to the lives of children and caregivers in other parts of the world?

Chaudhary: I like Heidi’s work on what she calls ‘aspects of care.’ Her work spans Southern America, Cameroon, India, Germany, and the UK. One of our collaborators did a study on parental warmth towards the child and found that there was no such concept that she could hang on to (across cultures). When she talked about play to caregivers, mothers in rural Gujrat said, “I don’t play with children; children play with children! That’s the job.”

There is also damaging research conducted by UNICEF and WHO published in eminent journals like The Lancet.

Dhar: This area is called Global Early Child Development and seems similar to the global mental health movement.

Chaudhary: It says poor parents raise criminal children. Even with racial injustice, which seems to have gotten worse, there is still activism around race and gender, but why haven’t we had poverty activism? Because the people you’re talking about (poor people) are too busy working and surviving to get together to say, “Hey, you cannot say that about me.” So, who is going to speak on their behalf?

Get up and look at this injustice — people are arguing that poor people raise criminals. It’s helping someone by saying, “You’re not a very nice person, but I’m going to help you.”

Why have we not looked at the deliberately violent language that UNICEF uses to talk about 200 million people? Who is going to stand up to UNICEF and say no? My work has shifted to resist the ideologies of these global agencies, which emerge from the ideas of Attachment Theory.

Ayurdhi Dhar: These agencies are taking for granted what are basic cognitive skills or types of emotions and assuming them to be universal; e.g., aggression must be inhibited only in a certain way. Historians and anthropologists have long criticized such over-simplifications and interventions. These agencies assume they know what is psychologically good and healthy for everyone, but what’s the quality of research they have?

Chaudhary: They have research they call good, but it has the same WEIRD characteristic because they depend on Western psychologists.

Even when the work is done across cultures, the protocols are still the same. To test intelligence, you may substitute a tree for the American flag, but you don’t understand that the procedure differs in places where children learn from and with other children. Individual testing is not the best way to assess them.

For example, we were studying a large joint family with several brothers, sisters, and aunts in a rural household. I don’t study individual children; I study families and focus on children. Focussing on the middle child (Manu), we were studying whether she grasps the idea of under, over, on top of, behind, on the side of, etc. Our protocol required us to be alone with her, which was impossible. In a rural household, in an open courtyard, to go into a small room and close the door where there are no doors is impossible.

Her older sister (Tanu) was sitting there too, and Manu answered clearly because, in her ordinary life, she uses the concepts of under, over, behind, etc. But for testing, her older sister was separated. Immediately the child clamped up. She could not imagine a situation in which her older sister was separated – “Why would you remove my sister; she is my teacher, my constant companion.” But when the sister was there, she would help the child. This is not something that would pass a standard of a testing situation.

One day all the women were outside — the mother was breastfeeding her baby, somebody was weaving a basket, the aunt was sitting nearby, the grandmother was on a cot, and everybody was chatting. Manu took a jug of chach (buttermilk) and dropped it. The mother comes, and she whacks Tanu on her cheek. This girl kept quiet. She is five or six; she did not betray her younger sister. She took that spanking. Switch to another scene. The two of them are playing ghar-ghar (home), and Tano bullies this child. She is in control and requires unconditional compliance from her younger sister.

This kind of fluctuating relationship is assumed as pathological, but I see that as collaboration and learning from each other and gaining from sometimes following and sometimes leading, sometimes being saved, and sometimes even being pressured by that person. I see that as natural for children everywhere.

But in research, when you take a measurement that is developed somewhere else in a school system where individual children are used to being assessed and spoken to dyadically, you’re not even reaching the surface of what a child can do in another culture.

Dhar: Based on these inappropriate research methods, global policies are made about child care. There are dire consequences. For example, the movie Mrs. Chatterjee vs. Norway recently came out, which talked about the famous case of an Indian family in Norway and their children being taken away. One of the accusations was feeding the child with one’s hands and the children co-sleeping with the parents. You know the case personally. Could you tell us what’s sensationalized and what’s true?

Chaudhary: I met Sagarika (the mother) and had access to all the documents — that thick file that comes up in the movie. I invited her to my department for a talk years ago after she had gained custody of the children.

I remember exactly the incidents that have been reflected in the movie. The early part of the film, which has the reasons for taking away the child, was accurate.

The baby, by the way, was on the second day after having received the DPT vaccine and had a fever, so the mother was a mess.

Dhar: I wonder what interventions the Global Early Child Development movement is putting forth. I look at my bright, kind American students and often see a group that is deeply traumatized, painfully alone, over-diagnosed, and over-drugged, with high rates of suicides among adolescents, school shootings, etc. Where do these agencies get the arrogance to think they can help children in other parts of the world?

Shifting gears, let’s talk about your work on the idea of self. Many ways we think about mental disorders are based on this idea of the self, which is supposed to be this one single thing that is within us. There is the idea of a scattered, disintegrated, disorganized self. Then there are ideas in Western philosophy around the one true authentic self. Changing who you are might be inauthentic in one culture and a form of social intelligence in another. Your work and a lot of other research have challenged these ideas. Tell us more.

Chaudhary: It is based on the work on the dialogical self by Hubert Hermans — self is developed in response to others; it’s not something that is packaged. This helps to explore the multi-dimensionality of the self and argues against this notion of a singular identifiable consistent, predictable self that you always rely on as a model.

An important proposition from my work is that what you argue as ill-health or mental illness is culturally situated. More importantly, how you handle it and how you treat it must consider the context in which a person is living.

I would say, therefore, family therapy is an alternative to individual therapy. I have a lot of colleagues across the world, and so many are in individual therapy – “I have this crisis; I am going to therapy.”

Therapy has become an industry, and I am suspicious of industries that have become too large. Although the people I live among in India have difficult lives, the resources they depend on for mental well-being are different, like women getting together and talking to other women.

Dhar: I see groups of women in my neighborhood diligently going for evening walks where they talk about children, husbands, and housework. This is a prized resource for dealing with life and its suffering. But we devalue it by saying that therapy should be the primary place to take our problems. It’s the same arrogance in the Global Early Childhood Movement – “You just don’t know any better, and we’re here to teach you the right way.”        

Any other thoughts before we end this interview?

Chaudhary:  The point is that however much we all hanker for doing better in life, we must remember where we came from and ensure we don’t sacrifice our senses by listening to other people’s experiences. I fear that global agencies that are responsible are not really listening to people. They only want to do what they think is good for other people, and I’m sorry, I’m just not in agreement with that approach.

****

MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Challenging Western-Centric Child Psychology: An Interview with Nandita Chaudhary appeared first on Mad In America.

Dr. Turner has been an FDA reviewer and has dedicated his work and life to improving research transparency. He’s well known for his work on publication bias and antidepressant trials, but his findings show that psychotherapy research is also riddled with problems.

What happens when those we trust with knowledge in our society betray us? In today’s interview, we discuss how dubious research practices are not simply the work of a few bad apples but instead built into the way we produce knowledge. We further explore the consequences of these practices on patients and the dangerous tradition of journal worship before exploring how many of these problems can be solved.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: In 2008, you conducted a review of antidepressant trials to check for publication bias. Clinicians, researchers, and service users need trials that accurately and truthfully tell them whether a drug works and has adverse effects—the question of efficacy and safety. You found massive problems in the way antidepressant trials were published. What is publication bias, and what did you find in the 2008 review?

Erick Turner: In simplest terms, it’s picking and choosing what gets published and how it gets published.

Dhar: By authors and by journals?

Turner: Yes, both. It takes two to tango. We used FDA review documents. You can see all the results of all the trials that were done. These may or may not be published, which is the essence of publication bias. We took a cohort of antidepressant trials for 12 drugs. We tracked them into the published literature to see whether each trial was published and, if so, how it was published. Was it published in a way that agreed with the FDA data or not?

We found that if you only look at what ended up in the published literature, you would have the impression that virtually all the trials were positive. That means the drug demonstrated a statistical superiority to the placebo. So, it looked like the drugs couldn’t fail. However, if you look at the FDA review documents, you find there were quite a few more trials you didn’t even know existed from just looking into the published literature.

Furthermore, the way the results panned out was 50/50 in terms of positive versus not positive. So in 50% of the trials, the drug wasn’t good enough to beat a placebo. But you would never have known it from the published literature.

Dhar: You also write about spinning results.

Turner: A number of the trials were spun. Probably the most common maneuver was simply not publishing the (negative) trial. There were 11 trials that were negative, and the drug did not beat the placebo, yet they were published, and they looked positive. They used statistical alchemy to make a silk purse from a sow’s ear. Another phrase is putting lipstick on a pig.

Dhar: How did you react to finding all these problematic and dubious practices?

Turner: I personally wasn’t shocked because of my background at the FDA. I realized that there was this disconnect between what clinicians were seeing and what the FDA reviewers were seeing, and what was known to the FDA and the pharmaceutical industry. They had this secret going on that doctors and patients weren’t privy to.

Dhar: Was there any pushback from the academic or psychiatric community?

Turner: There was some. The drug companies hoped that no one would notice. But there were two problems. One was that the paper was published in the New England Journal of Medicine, which got a lot of press and international attention. So they couldn’t ignore it because it was creating a stir.

A few companies decided to push back. One of the arguments was that the negative studies were not important, so they didn’t deserve to be published. They argued, and I think it’s a specious argument, that the trials “failed”—not that the drug failed, but the study failed.

They argued that it shouldn’t matter that the study wasn’t published because it was scientifically flawed. We replied and said why not let the academic community make that decision? Why not publish it and let them decide rather than paternalistically deprive them of the information?

Dhar: That was 2008. In the new meta-analysis, you used FDA reviews of four recent antidepressants and studied around 30 trials. 15 had negative and 15 positive outcomes. How have things changed since 2008?

Turner: First, there was a smaller sample size of a number of drugs, 4 drugs as opposed to 12, so fewer trials. So, the pace of new antidepressants coming on the market has slowed from the good old days or bad old days. What we saw was there was an improvement.

There’s a glass half full, glass half empty aspect to this. Some negative trials were published. And shockingly, they frankly admitted that they were negative trials. There were still the bad old habits of deep-sixing some negative trials that also happened. There was some spin, so the old tricks are still in the playbook.

But it’s refreshing to see a little bit of movement toward improvement. The number of negative trials that were published transparently, that is, they (a) published them and (b) admitted that they were negative, had gone up from the older cohort, from 11% to 47%. The positive trials are a non-story because, of course, they’re going to be published transparently.

Dhar: In your 2013 paper, you write that publication bias is prevalent in psychiatry, medicine, and even in other sciences. But it is especially rampant in psychiatry. What makes psychiatry so uniquely vulnerable?

Turner: I don’t want to let the other disciplines off the hook. I think it’s easy to bash psychiatry and psychology. Most of the attention and scrutiny has been in the mental health area. We don’t know how bad it is in other areas unless we take a similar look at FDA reviews, compare the inception cohort (the initial trials), and then track them into the published literature.

Dhar: I ask because you write that psychiatry has had many more of these problems. Maybe it’s because, as you say, we’ve studied it more in psychiatry. Is there something about mental health that makes it vulnerable to these things?

Turner: There are differences within psychiatry. Looking at antipsychotics, there was also publication bias, but there was less of it. I think the reason for that is that there were fewer negative studies. Of course, positive studies are going to be published transparently. There’s nothing to lie about as it is with negative studies. For antipsychotics, you had a smaller proportion of negative studies compared to antidepressants and hence less of the bother. You still had a fair amount, mind you!

So, the more effective the drug, the less need for publication bias, the less effective the drug, the more that need for publication bias. Why is a certain class (of drugs) more prone to that? It could be that we’re dealing with soft endpoints. We are dealing with subjective questions like how do you rate your level of depression today? How is your energy level? All those things come down to the patient reporting subjectively, whereas, with blood pressure, you have a hard endpoint. With cholesterol, there’s very little subjectivity.

Another thing is, what is the motivation for publication bias? One is a lack of efficacy, but the other issue is safety, a safety problem. It could be that the drug works perfectly well, but it’s not supposed to kill people!

Dhar: Could you briefly tell us about a couple of different biases? What are some of the other ways this is done?

Turner: We talked about non-publication and spin. There is also a delay (of publication); one can do statistical alchemy of various sorts. The most common method we found was to change how the dropouts were reported because people always drop out of clinical trials.

You start with a certain number, maybe 100 patients, 50 get randomized to the drug, and 50 get randomized to a placebo. I can guarantee you’re never going to get 50. People are going to drop out. What do you do with the data from the people who drop out? Because people who carry on are people who did particularly well on the drug. If they drop out, maybe it’s because of more side effects or they experience less efficacy.

The most common statistical maneuver was ignoring the people who dropped out. But, of course, you’re not supposed to ignore these people. You’re supposed to account for them statistically!

Dhar: Let’s talk about blame. You write the blame for publication bias is complicated, and many parties are involved. How do authors, journals, and pharmaceuticals contribute?

Turner: You talked about a colleague who was disillusioned by the game playing—the analyzing, reanalyzing (of data). I saw this myself. You finish a study you’ve been working on for a year; there is this excitement, but you get the data and crunch the numbers and “Oh, shoot! The P value is not statistically significant. Something must be wrong. What did we do? How about if we look at this, use that, change this thing about the analysis?” So someone tries something and goes bingo! P less than 0.05 over here! It’s a game, and people geek out on it and take pride in being able to massage it into a statistically significant finding.

I want to emphasize that the culture is such that we didn’t think we were doing anything wrong. We just thought this was the way it was done. In many universities and elsewhere, you see your superiors, your mentors, and they’re doing it, and you go, “I guess that’s the way I’m supposed to do it too.” You feel if you get a non-significant finding, you have failed.

People become attached to their pet ideas; they embarked on this study because they believe that this works and will help people. You’ve worked at this for five years, but when you crunch the numbers, it doesn’t work. It just creates this cognitive dissonance and is like Elizabeth Kubler-Ross’s stages of grief. Denial is the first thing—no, it can’t be, and then there’s bargaining.

Dhar: And there’s anger.

Turner: Then you send it to the journal. People send a negative study to a journal, and they won’t even review it. They do a desk reject. If it does get reviewed, they might get feedback saying, “Why don’t you try this other analysis there?”—milking out a statistically significant finding, making a silk purse out of a sow’s ear, or putting lipstick on the pig.

Dhar: So, the blame lies with multiple parties. What made you study antidepressant trials and publication bias? Was it a purely academic pursuit?

Turner: I used to work as an FDA reviewer and had a private practice on the side. I was wearing both hats, having done research at the NIH and private practice. I thought what’s in journal articles is the truth—this is it, and we have access to it! Going from NIMH to FDA, I realized we really didn’t know diddly back at NIH; I was humbled.

At the FDA, I became aware of all these negative trials. There is information about drugs that the FDA and pharmaceutical companies know, but doctors who are prescribing do not know. I was reminded of that when putting on my clinician hat. It was wrong that I had to operate on this incomplete data.

There were some studies I was trying to get approved by the IRB. These were placebo-controlled trials. We were told that you could forget about it. They were not going to approve any placebo-controlled trials because they believe that if you have a new antidepressant and you show that it works equally to an already approved antidepressant, then by transitivity, it must work too. So, you just put it up against Prozac or Zoloft or Paxil, and “we know those work.” I’d say, “Wait a minute, Prozac, Zoloft, and Paxil don’t always work. You say that they work, but they often don’t beat placebo themselves,” and they would roll their eyes and say, “what are you talking about? The journal articles show that they work”.

I realized, of course, they believe this because they’ve been taught, like we’ve all been trained in medicine, that journal articles are the Holy Grail—the truth with the capital T. I realized that no one would take my word for it that there were all these negative studies. So I have to prove it to them.

Dhar: I am glad you did. How do you work with this knowledge about inflated efficacy in your practice? How do you deal with patients on a day-to-day basis, knowing what you know?

Turner: I try to be transparent with them and tell them not to get their hopes up too much. There’s a chance they may have a wonderful response, particularly if they’ve never had an antidepressant before. But the more trials they’ve had of antidepressants that haven’t worked, the less likely it is that the next one is going to work out.

I let them know that these drugs work very well for some people, but there are many people for whom they don’t work at all, and many people in between get a partial response.

Dhar: It gets even more complicated with all the new research on tapering and withdrawal showing that antidepressant withdrawal can be long-term. Is that also information that you share with patients?

Turner: Yeah, we talked about that as well, and particularly, that it will vary according to which drug we’re talking about. I’ll say this is a drug you do not want to run out of—there are a couple of them, SNRIs like duloxetine and venlafaxine, brand name Effexor and the SSRI Paxil.

Dhar: We’ve been talking about drugs, but it turns out that the problem is not just antidepressants or antipsychotics. You found that the same problems plague psychological treatments like therapy. Publication bias makes it seem like the treatment works a lot more than it does. Could you tell us about that?

Turner: The key is to get an inception cohort and evidence of the trial before the study is conducted when everyone’s optimistic. The FDA learns about these trials of drugs before they’re done.

In the case of psychotherapy studies, there is no FDA. However, using the NIH database called Reporter, we were able to identify cohorts of psychotherapy trials for depression, and we could track these studies and see which ones were published. We found that there were a number of psychotherapy trials that were not published.

About three-quarters of the studies were published, and roughly a quarter were not. So, all we could look at was publication versus not publication but nothing about spin, as we did with drugs. Looking at FDA documents on drugs, you see the FDA got this non-significant result, but somehow, the authors got a statistically significant result in the publication. We could not do that with psychotherapy trials. So, I think our findings paint a rosier picture, and it’s worse in reality because surely there’re trials that were not published the way they should have been.

Dhar: There was a 2020 study from Germany where they found a lot of spin in the results of psychotherapy studies. So, there’s publication bias in drug and psychotherapy trials, and your other work found problems in meta-analyses, too. They often don’t report conflicts of interest that are there in the studies that they’re reviewing. So, what are the real-world consequences of all this, of clinicians, patients, and researchers thinking something works when it doesn’t?

Turner: There are two major domains to drugs or to any intervention: efficacy (does it work) and safety (are there harms). Clinicians talk about the risk-benefit ratio when they prescribe. Publication bias exaggerates the benefits and downplays the harms. So, you wind up with this perceived risk-benefit ratio that is overly rosy. That gets communicated to prescribing clinicians and then relayed to the patient. So, you wind up with more prescribing than is warranted or a lack of vigilance for harms/side effects.

Dhar: Did you ever meet clinicians who didn’t believe your findings? What is their response?

Turner: This area of research falls under the umbrella of meta-research or research about research. I worry that a lot of clinicians don’t know about it. With researchers, you either get “I didn’t know that was happening” or “Of course, it happens. Everyone knows about that.” But I don’t know if it translates into critical thinking when it comes to consuming information.

In the U.S., we’ve got direct-to-consumer advertising. If soap is advertised on TV as the best soap ever, you roll your eyes and say, “of course, they would say that.” But when you see a drug ad or you hear a key opinion leader (KOL) at a conference talking about some drug, there’s not enough critical thinking – “Wait a minute, this guy’s funded, paid to come here by a drug company and maybe that’s why he’s saying such wonderful things about this drug, maybe I shouldn’t be so quick to prescribe it.”

People put drugs and healthcare on a pedestal, but there are incentives and motives. We don’t hesitate to question things in the world outside of healthcare, but when it comes to healthcare, “Oh, they wouldn’t! If it’s in a journal article, it must be true. It is peer-reviewed.” There’s this naivety about healthcare that if it’s in a journal, it has somehow been blessed and sanctified and is not to be questioned.

Dhar: Can you tell us about the flaws in how peer-reviewed research is done?

Turner: I think the biggest flaw is not identifying an inception cohort before the study is done, and everyone still believes they will have positive results. The study has been initiated, the data collected, and all the analyses have been run, and rerun and rerun until a statistically significant effect has been found.

Then the writing starts – now we have something that’s “publishable,” which is a problematic word – the belief that you can’t publish it unless it’s statistically significant. Then it gets submitted to a journal. So, the writing, reviewing, and publication decisions are made after you know the results. The key is you have to eliminate knowledge of the results being a deciding factor as to whether the research gets published or not.

Dhar: I know that trials need to be registered, but just because they are registered at the beginning doesn’t mean they must be published. What would happen if we forced trials to be published, irrespective of results?

Turner: If you mean published in a journal article, true, they do not have to be published. But the results do, by law, have to be posted on www.clinicaltrials.gov. Many clinicians don’t think about going there and looking for the results of clinical trials. They all know about journal articles. But they haven’t thought about looking at www.clinicaltrials.gov. It doesn’t have the storytelling panache that a journal article does.

Another thing that would help is reviewing in two stages, once before the study is even conducted and then later after the results are in. But the publication decision should be made before the study is conducted. The peer review takes place at stage one and stage two, and a decision about publication is made at stage one before the study is done. Registered Reports is an effort led by a psychologist at Cardiff University in Wales.

Dhar: So, in the first stage, you look at the design, statistical tests, the method, and decide whether it’s worthy of publication based on that and not the results, right?

Turner: Yes. That’s where the decision (to publish or not) should be made. That’s how it’s done in the case of grants. Grant funding agencies decide whether to fund something based on a protocol. There’s no reason that a publication decision can’t be made then. There you can determine: is this good science? Are the methods good? The decision as to whether it’s good science shouldn’t depend upon whether the results were statistically significant.

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post “Making a Silk Purse Out of a Sow’s Ear”: Erick Turner on How Publication Bias Threatens Research Integrity and Public Health appeared first on Mad In America.

In this interview, we will cover his histography of psychiatry, engage with his writings on the DSM, and talk about what gives psychiatry its almost supernatural powers to rise from near death over and over and over.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: How did you end up studying psychiatry, its ignorance, fault lines, and tumultuous history?

Owen Whooley: My research is linked to my personal biography. Growing up, my father had mental health challenges—major depression, comorbid substance abuse, and multiple suicide attempts.

I was a kid, but two things were deeply ingrained from that experience. One is the uncertainty that permeates living with a loved one who is going through mental health crisis. The other was seeing the failures of my father to get adequate help. Whether that was a failing of his, of his providers, or some combination of both, the problem never got solved.

I realized that not only do I not understand what’s going on with my dad, but he also doesn’t seem to understand it, and his providers don’t seem to understand either. Flash-forward 30 years, and I’m writing a book on psychiatric ignorance.

The other moment was in graduate school, where someone flippantly said, “Everyone knows that the chemical imbalance theory is a myth, or it’s not supported.” I was like, “What? I’ve been told this for decades! Everyone knows that it’s not true?” I realized it was not quite that the emperor has no clothes, but the emperor is scantily clad.

Dhar:  In your book, you write that since its inception, psychiatry has been in trouble and that psychiatrists know it. You write that unlike other medical professions, psychiatry has amassed a frustrating record of failures, false starts, and dead ends—but here is the interesting thing—it continues to persist and is resilient. My question is, why? What has made this profession which is in continuous crisis, survive, and in many ways, thrive?

Whooley: The history of American psychiatry is a history of ignorance. Psychiatry lacks the basic understanding of the mechanisms underlying mental distress, mental disorder, and mental suffering—whatever terminology we’re using. Is it genetic, neurochemical, social, psychological, or family dynamics?

What struck me was the extent to which psychiatrists themselves talk about this ignorance. Given this ignorance and psychiatrists’ own acknowledgement, how has it been able to persist? I have two broad causes.

One reason is what psychiatrists themselves have done—the collective management of ignorance. When we look over American history, psychiatry looks vastly different in each era. Psychiatry has gone through a series of reinventions. These are moments when faced with a crisis pertaining to its ignorance, elite psychiatric professionals reinvent the profession, which allows psychiatry to restart the clock, to say, “Yes, we were in this crisis of ignorance, but that’s a problem of the past. We now have hit on this new way of thinking about mental illness, of studying and treating it”.

Over the course of 150 years, there has been this constant cycle of reinvention. Starting with the asylum period, you get a reinvention with the psycho-biological period, and then a reinvention into psychoanalysis, a brief attempt at community psychiatry, and then we’re here at the current moment. This reinvention allows psychiatry to make an important claim vis-à-vis its ignorance, namely that mental illness, although not known yet, is knowable.

Now, I don’t want to excuse Psychiatry’s numerous legions of abuses, but I think the tumultuous history of psychiatry and its persistence is also related to our collective social failure. We get the psychiatry that we deserve by not forcefully questioning it, and by stigmatizing and marginalizing individuals living with mental illness. It’s a combination.

Psychiatry persists because of the profession’s strategies to manage its ignorance and because of our collective indifference to the clientele that psychiatry purports to serve.

Dhar: If it was any other medical profession reinventing itself continuously, somebody would’ve said, “You really don’t have your shit together. How many times are you going to say we are right there, so close.” Does psychiatry serve some purpose to benefit the status quo that it’s able to reinvent itself over and over?

Whooley: In sociology, we talk about jurisdictions—what profession controls what area of work. For psychiatry’s jurisdiction, we have tasked it to deal with the highly marginalized communities around whom there is a ton of ignorance. This is the collective failure. As a society, we are willing to hand over the responsibility for this community—individuals living with severe and chronic mental illness—to psychiatry because other medical professionals don’t want to deal with this population.

We’ve farmed it out to psychiatry and said we’ll let you handle it. We won’t intervene or look into it, and in doing so, we wash our hands. This is social control; take this problem and control it, so we don’t have to deal with it.

Dhar: You write that psychiatry is an insecure profession, and different historians often make the same mistake by assuming that the profession is coherent and that psychiatrists know what they are doing. You say that’s giving too much credit to the profession, which is basically, in your words, ‘muddling through.’ Can you talk more about this and whether the profession’s hubris is connected to their insecurity?

Whooley: In historian Barbara Tuchman’s wonderful book called The March of Folly, she writes that when historians look back on important events and try to make sense of them, they impose on them a reason or rationality. They want to make sense of ‘why did so and so make this decision?’ They can impute more coherence than there actually was. Sometimes people just make bad decisions, and then there is happenstance and mere chance. When you impose coherence retrospectively, you distort the understanding of what actually happened. That’s how I think about psychiatry.

We, as social scientists, want to make sense of the world, but if we look at my historiography of psychiatry, there is no coherent program here. There is no overarching narrative of progress here. What you see is the cyclical replaying of the same problems over and over. We see this with treatments and with theories around mental distress.

The history around the reinvention of psychiatry goes something like this. Psychiatry has this underlying ignorance. Eventually, it erupts. There is a crisis, and the response of reformers is to reinvent the profession—that is, a very dramatic transformation of the profession. We get new ideas, theories, treatments, organizations, and institutions. They actually redefine what mental distress is—there are fundamental, epistemological, and ontological changes.

In order to make those changes and to promote those reinventions, psychiatrists engage in hype. Sociologists of technology talk about what’s called the hype-disappointment cycle. In Silicon Valley, we get a new idea, and we’re going to really hype it up. We get investors, create a buzz, and secure resources. That’s what psychiatry does.

Now the flipside to hype is hubris. Psychiatrists believe the hype and then undertake these transformations in an incredibly aggressive way. That’s where hubris is tagged along with the reinvention. We’re seeing it play out today with psychopharmaceutical medications—eventually, the sheen begins to wear off, the initial claims of efficacy are shown to be problematic, and ignorance once again rears its head. Then psychiatry moves on to the next thing.

Dhar: Let’s talk about specific types of reinventions. You write about psychoanalysis and how it was one of the reinventions that used the strategy of mystification to reinvent psychiatry. Your quote was, “Mystification is the process of making expertise inaccessible to external judgment”—if you haven’t been through analysis, you can’t critique analysis. Can you tell us about how psychoanalysis managed this and how it eventually failed?

Whooley: Let’s say you have an insecure knowledge base. What do you do? One strategy is to essentially remove that problematic knowledge from public scrutiny, to hide it, but in hiding it, imbue it with a kind of prestige or mystique.

How do psychoanalysts do this? In its more traditional forms, psychoanalysis is a form of knowledge production based on the interpretation of a patient’s subconscious. So, you already have a level of removal. It’s an interpretation that is an emergent property of the interaction between the analyst and the patient. One can just say, “if you’re not in that room, you don’t understand the dynamics that are happening that are leading to these interpretations.” If you were to challenge the claims made by psychoanalysts, you really have little grounds to do so. The rhetoric is: you’re not there; you don’t understand.

Also, psychoanalytic knowledge is couched in a particular jargon and a set of concepts that only those who are trained in that tradition can make sense of. This mystification allowed American psychiatry to embrace psychoanalysis to an extreme degree. Eventually, people begin to ask for evidence. At the beginning of the 1970s, insurance companies got involved in paying for therapy. They wanted oversight and some account of the efficacy—your patient has been in psychoanalysis for two decades. What’s the outcome? The FDA begins to commit to randomized controlled trials. Very hard to fit a psychoanalytic paradigm within a randomized controlled trial.

In the 1970s, American psychiatrists/psychoanalysts were presented with this challenge. There were feeble attempts to bend psychoanalytic thinking to meet these new evidentiary regimes, but they couldn’t do so. Then there was a crisis, and it wasn’t just about evidence. This was also the emergence of the antipsychiatry movement in the US. This crisis led to the DSM and the diagnostic psychiatry that that followed.

Dhar: Then comes the biomedical model, the most recent reinvention. You write that these were people following Emil Kraepelin’s work, and in the emerging DSM, the biomedical model was implicitly present with this idea of psychological distress as a disease. What was the promise of this reinvention? How did professionals popularize this vision of psychiatry, that it’s a medical branch dealing with real diseases? How do you see it failing?

Whooley: Back in the 1970s, antipsychiatry emerged. One major critique focused on diagnosis. Can psychiatrists actually identify people who have a mental illness versus people who don’t? The famous but now debunked Rosenhan study takes place. What you have then is this crisis and the need for the next thing. A pretty small group of psychiatrists who self-identified as neo-Kraepelinians, led by Robert Spitzer, wanted to reinvent psychiatry along more medical lines. They decided to radically revise the diagnostic and statistical manual of mental disorders in a particular way, the revisions to DSM III.

The previous DSMs were very psychodynamic in nature. Psychoanalysts themselves are not that interested in diagnoses because their treatment is based on the specificities of the patient. In fact, one of the reasons that neo-Kraepelinians took over was that no one else wanted to do it. It was seen as an unglamorous bureaucratic thing, but Robert Spitzer had a vision, and he wanted to harness the DSM III revision to reinvent the profession. The explicit aim of the DSM revision was to improve reliability by addressing this issue of diagnosis. So, if I’m doing research on major depressive disorder and you’re doing it in your lab, then we are looking at the same thing.

They revised the very conceptualization of what a mental disorder was, which to this day, is a list of various symptom criteria that patients need to meet in order to qualify for a diagnosis. The idea was that these are agnostic towards any kind of causal argument. But the broader vision was to build a biomedical knowledge base. The idea was that reliability would lead to a robust biomedical research program, which would finally solve the puzzle of mental illness and legitimize psychiatry as a medical science.

Now that hasn’t happened. Fast-forward to DSM V—in the lead-up to DSM V, once again, psychiatrists begin to recognize their ignorance. 30 years into the DSM III’s research program, we still don’t have an understanding of the underlying biological mechanisms of mental distress. We put a lot of hype into genetic science, which ends up being a mess. Neuroscience is still a little bit too premature, but even that’s showing that maybe we got off the wrong track with DSM III, because, at the end of the day, reliable diagnoses do not equal valid diagnoses. Validity means it reflects an actual real thing in reality.

There were concerns among the folks leading DSM V that “we’ve gotten off the wrong track with DSM III. Let’s use DSM V to introduce a new paradigm shift in psychiatry.”

Dhar: That was an important phrase, “paradigm shift,” and they said that early on. Yes.

Whooley: It was always unclear what the paradigm shift would be. Initially, they wanted to redefine mental health diagnoses based on the best science of the day, biomedical science. That was way too premature. Eventually, they decided they were going to redefine mental disorders from discreet categories to dimensional things.

DSM III carved out the universe of mental disorders into very discrete categories. We no longer talk about anxiety generally; we talk about specific kinds of anxiety, OCD, social anxiety, etc. The DSM V research shows these things tend to work along a spectrum.

Dimensionality became the means by which the paradigm shift was to happen. This didn’t happen because you get a lot of pushback within the profession about the state of its ignorance. Was the DSM III’s model inherently flawed, or have we just not given it enough time? Many elites in the profession fell into that latter group.

What you have is a professional disaster or, at the very least, an embarrassment, where you have previous chairs of the DSM arguing with the new DSM V. I interviewed 30 individuals involved with the DSM V. It was a very disorganized process. They felt like they didn’t have much guidance beyond, “Do something dramatic with the categories you’re assigned to.” So, at the end of the day, a paradigm shift doesn’t happen. DSM V looks pretty similar to DSM III.

Then, even more embarrassingly for the profession, the National Institute of Mental Health announced, literally a couple of weeks before the publication of DSM V, that they were no longer going to be using the DSM and were moving to a new diagnostic system, which they called the Research Domain Criteria (RDoc).

The DSM dominated psychiatry because it was seen as useable for both researchers and clinicians. Now you have the most important mental health research funder saying no, the DSM is not good enough; we’re going to require anyone who wants funding to use this other diagnostic system.

Dhar: In your book, you mention that in the 1950s or ’60s, the NIMH refused to fund studies of neo-Kraepelinians, the biomedical people, and then it flipped, and in the early 2000s, they decided to only focus on funding biomedical research.

Whooley: That is a recurring story. This kind of massive investment in particular ideas and programs that, after decades, don’t bear fruit. It raises really deep philosophical questions. Is mental distress knowable? Or is it knowable in one way? Psychiatry is compelled by the desire to find the explanation. What is the one explanation?

As a sociologist, I would say, stop looking for one explanation. You get the hype of the new thing, and you invest all your resources into it, neglecting all the other possible venues.

Dhar: For people on ground, what is the cost of these reinventions?

Whooley: I think the major cost is the perniciousness of the hype that leads to wanton experimenting upon mental health patients, especially in this current moment around psychopharmaceutical drugs.

I also have taken psychopharmaceutical drugs under the premise of chemical imbalance theories, explicitly told to me on various occasions. We’ve conducted a mass medicating of people under flimsy theoretical scientific premises.

To be fair, many people benefited from it, and now we might say that’s a placebo effect, but for some people, these drugs are perceived by some as life savers. Given this current discussion around tapering and questions of efficacy of these medications, what’s the social effect of the growing perception that there was this mass deception? What’s the effect culturally, of the ways in which we made sense of mental distress for the last three decades and the ways in which we’ve invested resources based on that understanding?

The sociologist in me will say, we’ve spent so much time medicalizing these things that we disinvested in the social factors and determinants that lead to mental distress. We’ve undermined the treatment infrastructure by focusing solely on pills.

Dhar: For me, one of the biggest costs is how it has changed people’s experience of themselves and how they understand and story their distress. 

You have described the role of psychopharmaceuticals in the success of DSM III, the development of Prozac, and direct advertising of drugs to consumers, and you write, “DSM III locked psychiatry in a symbiotic relationship with pharmaceutical companies.” Could you elaborate?

Whooley: DSM III carved out the universe of mental distress into smaller and smaller bits, and produced—to put it crudely—more ways of being mentally ill. That is a gold mine for pharmaceutical companies because it defines more markets for their wares. Not just more markets for them to test and develop drugs, but more markets to reframe existing drugs.

Paxil is an antidepressant that does pretty much what Prozac does. Prozac had already captured the market on depression. So, they reframed Paxil as a treatment for social anxiety. The DSM doesn’t have the same kind of packed punch without pharmaceutical companies.

Happening concurrently with the development of these drugs is emergence of direct-to-consumer advertisements. Pharmaceutical companies, through advertisements directly to the public through television, become the voice disseminating DSM categories.

Psychiatrists are really sensitive when you bring out this kind of relationship with pharmaceutical companies. You have folks like Ronald Pies saying, “We’ve never supported the chemical imbalance theory,” which is a cynical argument that’s too cute by half. Yes, maybe the APA didn’t come out and say, “Yes, the cause of mental illness is chemical imbalance,” but the entire profession was premised on that idea.

What’s interesting is what’s happening now with pharmaceutical companies that are getting out of the business of psychopharmaceutical medications and not seeing it as a particularly fruitful endeavor. As existing drugs are being increasingly challenged for their efficacy, pharmaceutical companies are backing off, which begs the question, where does psychiatry head because, essentially, psychiatrists have really narrowed their practice to medication management.

Dhar: You write that psychiatrists moved away from doing clinical work to medication management, but that the latter is now primarily done by general practitioners. So, where does that leave psychiatrists?

Whooley: If I were a psychiatrist, I’d be concerned because, as you mentioned, they ceded psychotherapy to psychologists and other counselors, and most psychopharmaceutical prescriptions come from general practitioners. The new hope for psychiatry is neuroscience, but that begs the question, why wouldn’t it just be neurology rather than psychiatry, if neuroscience pans out? There is a long history where once we medically can explain a condition, we take it away from psychiatry and give it to another medical specialty. I think the next 20 years are going to be really interesting for psychiatry, and I don’t pretend to know where it’s headed.

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Psychiatry’s Cycle of Ignorance and Reinvention: An Interview with Owen Whooley appeared first on Mad In America.

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MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.

The post Exploring the Fault Lines in Mental Health Discourse: An Interview with Psychologist Justin Karter appeared first on Mad In America.

Apart from an impressive set of publications, Dr. Rose’s new book Mad Knowledges and User-Led Research is about to hit the markets. In today’s interview, she brings together her vast breadth of experience and depth of knowledge to talk about the challenges service users and survivors of psychiatry face when they take space as knowers and researchers in the Psy-disciplines.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: Could you tell us what service user or survivor research is?

Diana Rose: In this research, everything is done from the standpoint of being both a survivor and a researcher. It’s not an additive thing, it’s a synthetic thing. You use service user experiences to inform everything you do. Language sharing is very important to individual persons who embody these things. Their challenges are taken for granted which you have to bring to light.

Dhar: What are some of the challenges that you faced and victories you encountered when you did this kind of research?

Rose: The worst thing is false welcoming. You get seduced into thinking that they (non-service user researchers) really want you there, but actually it’s for their benefit. That’s a lesson that I learned pretty early on. There are challenges in methods, in working together with people who are not survivors. Psy-disciplines are empiricists that don’t deal in concepts, and concepts are very important.

Dhar: What do you mean?

Rose: Epistemic injustice—mad people are positioned as not being able to know, not credible knowers, not having a discourse of their own. It’s very difficult to articulate your experience if you are systematically discouraged for doing that. Psy-discourse individuates so that you can’t get together and collectively talk about what these things are.

Dhar: The language used when a survivor talks about their experience folds everything into the narrative of Psychology. “I am really scared this will happen” turns into “the patient sounds paranoid.” These narratives have a huge effect on people. Being scared due to one’s experience with the mental health system turns into paranoia, which is situated inside you.

Rose: That’s what I mean by individualization. A patient complains to their doctor about their landlords. Some psychiatrists might write to the landlord but most think “Is this complaint paranoia? Is it a hallucination?” They’re ripping people away from their material and symbolic environments, just focusing on what’s going on internally in their head. Psychology is worse than psychiatry when it comes to this.

Dhar: I once had a friend experiencing what we now know as akathisia due to antipsychotics—burning, pain etc. I thought he was hallucinating. Now I know otherwise. Psychology’s language allows you to capture and interiorize that.

Rose: Years ago when I was in the old asylums, the nurses never told you these things. I would get restless legs, couldn’t sit still. Another patient explained to me it was a drug side effect. I realized other patients knew an awful lot and were willing to share it, and the nurses let you think it was part of your illness.

Dhar: What are some of the challenges that service users and survivors face when they try to participate in research?

Rose: Both psychologists and psychiatrists see you through a double lens. They’re interested in your diagnosis. They’re interested in what’s the matter with you, and so your identity as a researcher is moved away. Especially when I did work about ECT (electroconvulsive therapy), it was always “Why did she have ECT? What’s the matter with her?” They are basically seeing you as a patient, and that’s disheartening.

It’s complicated because you want this double synthetic identity but you don’t want to be reduced to “patient” as conceived by psychiatrists or psychologists. It’s not about “this is the matter with me.”

Dhar: How do service users deal with this stigma and assumptions about them? Researchers might say “we have open arms and minds” but that’s not always the case.

Rose: We did some work on ECT commissioned by the government. There was hostility towards it from the steering group which comprised of many psychiatrists and methodologists, mainly quantitative. They asked us to do a systematic review of consumers’ perspectives on ECT and we did. I can do research and they were a bit surprised. They said at a meeting “we won’t take the service users first because they’ll have nothing to say.” Then we did our presentation, me and my colleagues who had had ECT. They were gobsmacked.

You can get demoralized being treated this way. It’s difficult because people need their jobs so they can’t be super critical without getting into trouble. Some decide to play the game or might genuinely want to maximize their research experience at the expense of their survivor experience. People get sucked in. I’ve been sucked in.

Dhar: What’s the most important user research you have ever seen?

Rose: A recent one was very brave. It looked at hate crime against people with mental health diagnosis. Most mainstream researchers wouldn’t touch that. It was a small intensive user-led interview study, and it brought to light what people have to suffer because of their diagnosis—the kind of abuse, like being burgled, having feces put through their door. It hasn’t had an awful lot of publicity, but it’s good research.

Dhar: You said sometimes service users are sucked in. How can research be conducted in which that does not happen, in which their experiences don’t get co-opted? Sometimes researchers choose service users who say things they like. Have you seen that happen?

Rose: It happened to me. I had no idea and I left the project and took my name off. I said I didn’t want to be an author on any more papers from that project. I was out of work for 10 years and living on benefits. I was just so happy to have a job. The research turned out to be ridiculous, all about measurement. They just wanted a badge and to an extent they got it for a while, and then I left.

Dhar: What are some of the ways we bulldoze the voice of service users in this research?

Rose: If you’re medicated, you’re a bit like a zombie—not that easy to get up at half past seven in the morning. Then there’s cooption. Power comes in different forms, from coercion and cooption, to seduction… Cooption happened with this idea of recovery. It started out with service users and got turned into a treatment by psychologists and psychiatrists, individualized instead of collectivized.

Peer support is another one. It used to be groups where people would talk about and reflect upon their experiences. Now you get peer support workers, one or two. They have a difficult job because they’re there because they’ve got experience, but they’re supposed to be further along in their recovery journey. They’ve got to disclose but they mustn’t break boundaries. But where’s the boundary? You don’t know what you can disclose and what you shouldn’t.

Only recovery stories are allowed so you delete the distress, abuse, violence. If you can’t tell a recovery story you feel guilty because you haven’t recovered, one more thing you fail at.

Dhar: We can barely pin down what is a mental disorder and who has it, let alone who is recovering.

Rose: It was supposed to be an antidote so the biochemical model and to the idea that psychosis was inevitably degenerative, so you can give people hope and they can live meaningful lives even in the presence of “disease.” But it became individualized and normalized that you’re supposed to choose your own goals, but some goals are off limits. I mean, if you prefer your own company to other people, that’s not good enough, you’re supposed to have social networks. If you give up looking for a job because you’ve got a rubbish CV and all the jobs are terrible, that’s not allowed, because you’re supposed to be working. The normal autonomous choosing self-containing personal and social networks—that’s what a recovered person is according to this particular model.

Dhar: When it comes to epistemic injustice—the fact that certain voices are prioritized over other people’s voices—what has been the most awful example you have encountered?

Rose: There was a paper about why people from Black and Minority Ethnic (BAME) groups don’t take their medicines. They concluded it was due to BAME family culture. But if you look carefully people talked about poverty, colonialism, violence on the housing estates where they live. They weren’t heard because researchers were looking for a reason why they didn’t take their medications, and were not listening to the stories of distress. It was one of the worst pieces of research and it was supposed to be co-production.

Another example from my own work: We ran some focus groups of people who had been in inpatient wards. One guy told this story about nurses talking behind his back in a language they thought he couldn’t understand, but he could. He could speak 12 languages. I wrote this and the principal investigator said, “You can’t put that, and that can’t be true. People like him can’t speak 12 languages.” I said, “He comes from Kenya. In Kenya there are lots of languages that’re semantically and syntactically quite similar. It’s common to be able to speak 12 languages.” But I had to take out the quote.

Dhar: The BAME family culture—many of my students often say this—“People of color don’t seek mental health help because family culture.” I have to deconstruct that idea—what makes you think that the help they get will be useful? Jonathan Metzl and Helena Hansen’s work is useful. Given their history with mental health treatment, why should BAME families trust the system?

Rose: It is so Eurocentric.

Dhar: So, tell us about your journey. How did you end up studying these things?

Rose: I wasn’t, as we say in Scotland, “to the manor born.” My mom was a maid for a very rich family. My dad was a butcher until he went bust. It was very patriarchal and xenophobic, and so to get away and because I met people who were going to university, I thought I’ll give that a shot. In fact, I took my final exams in a mental hospital; it was my first admission. They gave me insulin coma therapy. My first job was in sociolinguistics, teaching and lecturing for 10 years, and then I was medically retired because I couldn’t hide it anymore; I was just bananas at work.

I lived on benefits for 10 years and got involved in the survivor movement which changed everything. I was told I should never try to get a job again. Later I moved to the Institute of Psychiatry. I was so relieved to be back in a university that I was taken in for a bit and I’m not proud of it. Gradually I saw what was going on and didn’t like it. I’m much happier now I’m retired. I can say what I like.

Dhar: You have written about knowledge co-production and, while trendy, you write that it is deeply complex. Could you say more?  

Rose: I don’t think you can do it in mental health because ultimately your colleague has the right to take away your liberty and treat you involuntarily. I don’t think co-production is possible between survivors and mainstream researchers. It was a very hierarchical unit where I worked.

I’ll give you an example. These are big projects with loads of investigators. On analysis days after data is in, you go away for few days as a group to analyze it. In the actual meetings the principal investigator tells the statisticians what statistical test to run. In this meeting they ran test after test after test. The null hypothesis was supported every time, everybody was depressed, and then whoops, a significant result! Whoops of joy around the table! They made it look like this conclusion was arrived at seamlessly, and all this messy underneath was invisible.

Dhar: It’s data torture.

Rose: I mean, 20 non-significant results, one significant result—that’s chance. That science is not pure, objective, neutral. The Psy-disciplines think the data speaks for itself, believe it or not!

I had a debate with a high-profile psychiatrist who said, “You have a table of p values. It tells you what the data means.” I said, “No, no, you’re interpreting that table.” He wouldn’t shift.

Dhar: There was a recent paper that proposed that the Psy-disciplines should not even be doing hypothesis-driven work. Given how much we know about the replication crisis in psychology, maybe it’s time to revisit what we call research in the first place. So, what would be a legitimate, good way of doing research?

Rose: I do a lot of conceptual work. For example, in a seminar of critical theory in psychiatry we were all bandying around this word “individualism,” and I asked, “what do you mean by it?” Nobody could answer. What I mean by it is what we were just talking about—a complaint becomes paranoia—a complaint is not a complaint about something in the environment that is real. It’s just a symptom.

So, first I will shift the spotlight on people’s conditions of existence and develop a theory of what is it that drives people mad. What are the conditions that sustain it, because some people have one psychotic break, and that’s it. Other people get sucked into the system for life. I like the concept of structural violence and social suffering.

About the methods—we have to consult much more with the community and with activists—what makes sense in terms of your life for us to understand it, for us to compare and contrast. Participatory research, ethnography, photo voice, experience sampling, video diaries, and those kinds of things where people are talking about their lives related to their illness.

I would take mental health out of health; they’re just not the same. Mental so-called health is a crisis of living and not as medical. But it’s a crisis, it’s an interruption. You have to address people’s conditions in life if you’re going to support them.

There’s another part of epistemic injustice, there’s a so-called hermeneutic gap. We don’t have a style of thought to articulate what it is happening to us and why it’s happening to us.

Dhar: What are the dangers of conflating mental distress or crisis of living and calling it a health issue?

Rose: Individualization is part of the medicalization of mental health. It’s stripping off people from their contexts. It needs to be placed in its conditions of existence.

Dhar: Your 2003 review was about patient perception of ECT. What did you find? Could you talk about your experience of being a part of this research?

Rose: We compared peer-reviewed articles. We found 29 articles written by clinicians and 9 by service user groups or in collaboration with them. We looked at perceived benefits, memory loss, absence of information, consent, and emotional trauma. We found that there was a vast discrepancy in reported benefit between mainstream papers and the papers that were produced by user groups.

When it came to memory loss and lack of information, the survivor papers and the mainstream papers reported the same proportion of people saying they had long-term memory loss or didn’t have enough information, but they interpreted them differently. Mainstream papers reported 60% people said they didn’t have enough information, but the papers didn’t discuss it; they were completely silent on it. When it came to long-term memory loss, which psychiatry always said didn’t happen, our reference group said it did. The mainstream papers said it was because of the depression, whereas the survivor papers said it was because of ECT. You get the same raw data, but different interpretations.

Also, we had testimonies from the internet of people who’d received ECT, and they supported the survivor papers. We were offered publication in the high-profile British Medical Journal, but they didn’t want the testimonies. We argued and they argued back and we gave in because everybody said it’s such a high-profile journal.

Dhar: How was the paper received?

Rose: Some people tried to tear it to pieces. People tried various ways of ameliorating memory loss, like giving people ketamine at the same time as the anesthetic. Some people supported it. If you look at the Royal College of Psychiatrists’ website now, their page on ECT, they don’t mention us. They say some patients and some user groups say that ECT causes permanent damage. The word research does not appear.

Dhar: That is a big omission. Not “some research suggests, but some patients say…”

Rose: It got so much publicity, but that’s how it stands now. It’s just the opinion of a user group. The number of people who received ECT in the U.K. has dropped from 11,000 a year to 2,000 a year. I’m not saying we’re responsible for that, and some people are very cross because they think it’s a good treatment.

Dhar: What role has psychology played in the execution and legitimization of the austerity measures in the UK? Psychology is linked to social control.

Rose: There’s a very good paper by Lynne Friedli and Robert Stearn, and they use the term psycho-compulsion. In the welfare benefit system, there’s a regime with conditionality. There are certain things you have to do or you’ll lose your money. We thought only medicines could be delivered by coercion, but one of the things that you have to do if you’re in a certain group is attend cognitive-behavioral therapy (CBT). We are made work-ready. Unemployment has become a condition to be treated by CBT, and psychologists are in job centers. You have to show up for your CBT session every week or your benefits stop. There is resistance, but it’s difficult because if you’re too vocal or active, then you might be seen as fit for work and lose your benefits.

Psychologists are complicit with the regime of austerity, supporting it, making it legitimate, supporting the horrible narrative of “scroungers not strivers.”

The post Is Service-User Research Possible in Mental Health? An Interview with Diana Rose appeared first on Mad In America.

In this interview he talks about how the psychiatric discourse has left the clinic and entered workplace, how the DSM has been feminized to the detriment of women, how and why the ADHD diagnosis has shifted shape, and lastly, how the global move towards “mental health” and away from “mental illness” might not be positive or benign.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: You have explored numerous criticisms of psychiatry. What brought you to them—when and how did you end up seeing these glaring problems?

Dr. Bruce Cohen: [Laughing] I am a sociologist, so disillusionment is what pays the bills. Back in the early 1990s, I was an undergraduate at the University of Teesside. As my first research gig at the time of community care in the UK, the psychiatric institutions were closing down and I did interviews with users, and survivors of the psychiatric hospital system.

I remember distinctly seeing a psychiatrist there as part of this team, the first experience I had of meeting a psychiatrist in my life—we mentioned how we were going to look at the needs of the users in the community, beyond the asylum system. The psychiatrist said to us, point blank, “There is no point in asking them what they want, you know. They are all mad. How are you going to get anything articulate out of this population?”

This was my first but not my last experience of the arrogance and the ignorance of the psychiatric profession. When we did these interviews with users and survivors, one of the first things they told us was, “We were never listened to by the psychiatrist, by the mental health nurses in the system. They ignored our voices. They avoided us on the wards.” We learned about things that were typical of the inpatient experience that we know from Goffman and Rosenhan’s work. Such is the hubris of the professional staff there—the use of medications, ECT, solitary confinement as forms of sedation and of punishment.

The paths that led users into institution were personal problems, family issues; this included the sectioning of people against their will into these places. There was also the rarity of being able to get out of these places, and many got out only because the place was closing. That was a really interesting and formative experience for me. A few years later I ended up doing an evaluation project on a home treatment service. This service was an alternative to inpatient care for acute or severe mentally ill people like those diagnosed with psychosis or bipolar disorder or schizophrenia.

Bradford Home Treatment Team would take people who would have a crisis and usually go into the hospital, and actually keep them at home. The workers would come around and see them. This was a team set up by Pat Bracken and Phil Thomas. This team questioned the ways that psychiatry worked with these users. They were fundamentally challenging their own psychiatric knowledge base. For instance, team meetings would discuss “Should we still use psychiatric labels? Should we maintain their medications or encourage them to reduce them because of the problems many antipsychotics and antidepressants can cause? The use of ECT—should we encourage it or discourage it?”

It was interesting to see a team of psychiatrically trained nurses and doctors, psychiatrists, psychologists, be emancipated to do something different. This was fascinating for me as a sociologist, and I saw there was a potential for the mental health system to be something different.

This led to my book on mental health user narratives, which is influenced by Arthur Kleinman’s work on Illness Narratives. I did open interviews with both those who were using the home treatment service as an alternative to inpatient treatment, as well as those who only had had inpatient treatment. I found with both sets of users a psychiatric discourse that was very powerful in their identities, and in explaining their situation and their future in terms of mental illness and recovery.

Hospital-only users would really follow a biomedical discourse—I have got schizophrenia. It’s a lifelong disease of the brain. It’s in the genes. Medications can only control the worst excesses of the diseases. Relapse is bound to occur. I feel I will require several inpatient treatments in the future for the rest of my life.” With the home treatment users with social critical engagement from Pat’s team, there was a downgrading of diagnosis. You have to remember all these people were considered acute and severe. But they downgraded their own diagnosis and they were saying, “I think I had more of a depression really. Or, it was a neurosis, or it was a crisis that happened due to social and environmental reasons. It’s a one-off. I don’t think it’s going to happen again.” That’s generalizing, but that was often the narrative that we got from those users.

The team working with these users had an emancipated idea of the possibility of their living without further contact from mental health services. The psychiatric discourse, the psychiatric language, the practices, the treatments—these can all have a significant impact on our identities and our understanding of ourselves.

Dhar: You write that psychiatric discourse has become hegemonic. Could you tell us what that means, and what are some of the consequences of this happening?

Cohen: Hegemonic means that the psychiatric discourse is now everywhere. This idea comes from cultural Marxist Antonio Gramsci and it means to be ruled by consent. This is a more subtle form of power than direct control. Imagine direct control as physical force from the army or police. Hegemonic control is more subtle—the dominant norms and values of the economic elites in capitalist society are proliferated through nonpolitical institutions—public institutions such as the education system, the criminal justice system, medicine, and the mental health system.

These ideas are communicated to us as being commonsense and become taken for granted ideas of how society should function. For instance, gender roles and the policing of the binary within the genders. So psychiatric discourse has proliferated. It has left the confines of the psychiatric hospital and the therapist office, and is present in our everyday lives, in schools, workplaces, unemployment centers, homes. It’s constantly in the media and social media. It’s a regular feature of our day-to-day conversations.

Previously, discussion of mental illness amongst the general public was rare. Now it’s commonplace. We can all name a few mental disorders. Most of us can name symptoms and even suggest causation, for example, it’s a brain disease, or chemical imbalances, or it’s due to trauma. Some of us can probably also name typical medications and other treatments. My research has really been primarily concerned with answering this question as to why psychiatric discourse has become hegemonic across Western society.

One of the obvious reasons is maybe more of us are mentally ill than ever before. But that’s incorrect. Robert Whitaker has noted that, using the marker of people in the US who are disabled by mental illness. The number of mental illnesses present in the DSM have gone up. We had 106 in 1952, we now have 374 today. For many of these classifications, the symptoms required to reach a disorder have been reduced. For instance, the DSM removing the exclusion criteria for major depression for bereavement following the death of a loved one. So that’s kind of problematic in measuring has mental illness really gone up?

An interesting bit of research is Amy Johnson’s article from last year. It’s an analysis of US National Health Interview Survey data between 1997 to 2017. She uses psychological distress and asked people how much are you worried, etc., about these issues. She concluded that there is little evidence that psychological distress has actually worsened over time.

Lots of people, including Whitaker and Cosgrove and myself, have talked about the ongoing validity problems with the psychiatric science in accurately defining, measuring, and explaining mental illness. Just one example recently is that Allsopp and colleagues looked at the major diagnostic categories which included depression and anxiety disorders in the current DSM, and they concluded that all the categories were scientifically worthless as tools to identify discrete mental disorders.

There is Irving Kirsch’s work among others, that point to the problematic conclusions of most antidepressants and antipsychotics being no more effective than placebo. The wonderful historian sociologist Andrew Scull concludes that the causation of most mental illness remains obscure, and its treatments are largely symptomatic and generally of dubious efficacy.

My answer for why the psychiatric discourse has become hegemonic is because Psychiatry has learned to speak the public language since the 1980s. Back in 1965, Mike Gorman addressed the American Psychiatric Association, and said, “Psychiatry must develop as public language. It must be decontaminated of jargon, and it must be suited to discussion of universal problems of our society. This is the difficult task that we face in psychiatry, but it must be done if psychiatry is to be heard in the civic halls of our nation.”

Our emotions, feelings, and behaviors, in the recent DSMs, are now considered common mental disorders, and they reflect our concerns, our anxieties living in late capitalist society. Throughout these diagnostic classifications are things that speak to our anxieties about not multitasking effectively enough. We are not working or studying hard enough. We are not happy with our work-life balance. We feel we are ineffective parents or carers. Our sex lives are a mess. We are gaming or drinking or smoking too much, etc. These are all within common mental illness categories. My argument is—psychiatric hegemony has actually successfully medicalized more and more aspects of our everyday lives, and the discourse has become totalizing.

Some people might say this is a great thing, that this can really help us because “I just thought I was feeling lazy or I was self-obsessed and then I got diagnosed as ADHD or whatever.” Many are relieved. But these are not mental disorders. My argument obviously follows Gramsci in that psychiatric discourse is, and always has been, a form of social control, which actually works to the better of capitalism; it doesn’t work for us. So, with the advent of a neoliberal ideology in the 1980s—a discourse that focuses more on the individual for reform or change of character, for improvement of ourselves—this discourse has become increasingly important. It’s not neutral or value-free, it actually reflects a dominant ideological rhetoric that speaks to a specific epoch, and has done ever since psychiatry has been around in industrial society.

Dhar: According to you, which diagnosis more than any other, betrays psychology’s ties to neoliberal capitalism?

Cohen: The most obvious one for me is ADHD. It was previously Attention Deficit Disorder. Before that, it was hyperkinesis, and before that it was various terms like minimal brain dysfunction. We see the expansion of categories in the DSM. In the 1970s, significant shifts take place in Western society. There is deindustrialization, the rise of service industries, a collapse of welfarism. There is a rise of neoliberal politics and desire to deregulate the market, take it out of state hands, sell off public industries, make cuts in welfare services and provision, and force the general population to rely more on themselves rather than the state to have to upscale, to have to work on themselves.

How does ADHD fit into this? The education system and the work environment had to change towards more seatwork, more intensive study, more analytical sets of skills, more flexible skills for the service economy, more IT skills and so on. And we can see this in the way ADHD actually changes. First, it focused on young people and later on adults as well. So, young people at school and then adults more in the workplace. Whereas hyperkinesis in the 1950s to 1970s was really seen as a rare condition amongst primary school children, ADHD is based on the changing demands of schooling at that time.

DSM is a fascinating document; DSM-III had things like “inattention caused by failing to finish things he or she starts, often not listening, easily distracted, having difficulty concentrating on school work, has difficulty staying seated, difficulty sticking to a play activity.” These are all things directly related to the classroom.

But then it moves into the adult world of work—the person will make careless mistakes at work or during other activities as well, they miss or they overlook details, their work is inaccurate. We have seen that one of the problems for capitalism has been the active worker disengagement—absenteeism or sickness. In the latest version of ADHD, and quite blatantly, they have just added lots of stuff to make it about your occupation as well. Now they have added poor time management, fails to meet deadlines at work. These are all symptoms of mental disorder. So, if you are not paying your bills on time, you are not keeping appointments, you could have ADHD.

Peter Conrad has talked about the modern form of ADHD as the medicalization of underproductivity. For example, at the university, one regularly gets requests for student extensions and the related mental health issue is often ADHD. In academia we have a mountain of work and I had a colleague who has a reflective critical attitude towards mental health system, but was actually relieved to get the diagnosis of ADHD. They could now access Adderall or Ritalin and perform more, which is of course the major component of Adderall or Ritalin. These are not mental illnesses per se, but they are actually issues of performance in neoliberal environment.

Dhar: This reminds me that for Emil Kraepelin, one of the primary indicators of dementia praecox was the fact that this person does not want to work. We can’t have that.

Cohen: Yeah, absolutely. This is the conservative nature of psychiatry going back to its birth.

Dhar: You write that psy-disciplines have provided a lot of pseudoscientific evidence to support neoliberal capitalism, thus turning social problems into individual problems, and social issues into individual deficits. I wanted to know more about this pseudoscientific evidence.

Cohen: The really conservative nature of psychiatry throughout its history reflects wider society. That’s a struggle between the workers and the owners and the means of production. It reflects the dominant norms or values of that society, particularly being a profession that is dominated by white middle class men. They are a profession that are the lackeys of capitalism.

Looking at gender inequalities, patriarchal power, and the roles of women and men—these are sociopolitical issues of sexism, discrimination, partner violence, poverty, compulsory heteronormativity. Why would psychiatric discourse promote these ideas? As lots of critical feminist scholars have signposted, and I with Rearna Hartmann have argued, this is to enforce patriarchal capitalism, that is, to keep women as second-class citizens to service the economy as unpaid or low-paid labor, to take the majority of the housework, as well as reproduce the future labor force here.

We have referred to this increased focus over time on women’s roles by psychiatry as feminization of the DSM. There has been an increase in the number of mental illnesses that are really gender biased against women, like the whole history of personality disorder. We see borderline personality disorder, body dysmorphic disorder, female sexual arousal disorder, gender identity disorder, female orgasmic disorder, binge eating etc.

Dhar: PMDD?

Cohen: Yes, exactly! Feminist scholars have said these are feminist categories that are connected to prevailing moralities and norms regarding gender, sexual expression, the gender order, and heteronormativity. For example, premenstrual dysphoric disorder symptoms include a lack of energy, specific food cravings, physical symptoms such as breast tenderness, joint or muscle pain, bloating, weight gain and so on. This is the medicalization of menses.

DSM states there is a decreased productivity and efficiency at work, school, and the home. PMDD is a pathologization of women as being victims of their own biology. And hey, this is not the first time it’s happened; it’s 200 years of history and a lot of that by psychiatry—“the women are subject to raging hormones.” It functions to legitimatize traditional constructions of femininity, and to restrict women’s access to equal opportunities. That includes taking up senior professional and public positions.

We argue that PMDD cautions women not to place their work responsibilities above the family responsibilities. That’s captured in contemporary advertisements for Sarafem, the preferred recommendation for PMDD. You see these adverts in which women are of course homemakers, they are carers, they are represented as mothers and wives.

Dhar: About your upcoming book, Selling Mental Health, you have written that the “mental health” discourse appears more benign than the “mental illness” discourse but it’s just as dangerous. Could you tell us more?

Cohen: As with the work of missionaries and anthropologists towards the colonial project, the mental health project can be understood as the advance troops of psychiatric hegemony. This is a way of proliferating the hegemony to capture more and more people. It captures all of us. There is still a chance that hopefully some of us can escape the mental illness label, but the clever and simple phrase “mental health” actually captures us all in it. Mental illness is becoming a bit passé in public health discourse as opposed to the phrase mental health, which obviously has a more positive conversation.

Even though we actually have no idea what the hell it is we are talking about, we are just like, “Well it’s got to be a good thing, it’s about mental health.” But when you break that down what the hell is that? One thing it is—it’s really big business.

There are these taglines of “no health without mental health” and “mental health is everybody’s business.” These have become commonplace. It’s not unusual to see workplaces holding mental health awareness sessions or school instituting mindfulness classes. Every disaster crisis leads commentators and campaigners to say we need more targeted mental health services. And we have consumer products which are now sold to us on the basis that they are actually good for our mental health and wellbeing.

So, the Selling Mental Health book actually continues this analysis about psychiatric hegemony, but through this concerted focus on promotion and the selling of the psychiatric discourse. The profession is legitimating the services, products, and the treatments, and doing it under this beautiful umbrella of “mental health.” And it’s under the guise of “it’s all for our public health, it’s all for our benefit.”

Dhar: These cracks that have been appearing for the last decades in the biomedical model—the dopamine hypothesis is under fire, prominent psychiatrists are saying, “Oh, we never said it was a chemical imbalance,” and we are taking psychiatric drug withdrawal more seriously. I wonder if switching from “mental illness” to “mental health” effectively neuters any kind of progress that we could make—“Oh, we don’t have to call it an illness, it’s a more health thing.”

Cohen: Absolutely. That normalization has happened very successfully. There is this saying “your wellbeing comes first.” Many universities have taken up this mantle for staff, faculty, and students. During COVID, with the staff losses we had, it was still “your wellbeing comes first.” We have a social wellness committee. It’s established to help foster, it says “a positive workplace culture and environment that promotes staff wellness that’s both physical and mental, and that is welcoming, inclusive and safe for all staff”—all very well.

We have had loads of activities—Auckland Bike Challenge, Auckland Walk Challenge, posters about of course mental health awareness week, etc. However, and this is where it gets political and serious for me: myself and my colleagues are basically expected to do more and more over time with less. This is especially true over the last couple of years, but I would say this goes back five to eight years. We lost administrative staff, two to three in sociology, there’s been a virtual freeze on new academic employments. Even our tea room was taken away from us.

The morale is not good—how can chair massages take away the fundamental problems of institutional under-resourcing? These mental health initiatives in the workplaces have spread out in a relentless way on the back of slogans like “mental health is everybody’s business” which is the idea that mental health is costing businesses a lot of money, so basically, the more you can aid the mental health of your workers, the more productivity will go up.

But, the finding of a number of surveys suggests this is more of a surveillance and social control process. This is despite evidence that if you made your workplace more favorable for the employees, that would have a positive effect on mental health. So, you had this focus on basically individuals rather than organizations. There is a report for the Australian government that suggests more explicitly involvement of employees themselves in surveillance measures.

Writings from North America suggests three things. First of all, all of this is about coercive practices which force workers to self-label as being mental disordered. There are expectations for the employees to be mentally well at all times.

Secondly, it’s the reframing of workplace conflicts as personal issues. Structural issues within the organization such as downsizing our university, these are individualized through mental health initiatives—there is a concentration on the employee and their emotional reactions and need for personal adjustment. They have one of these sessions when they are about to sack employees.

The third issue is an increased use of diagnostic labels and discriminatory behavior against those who are labelled as mentally ill within the workplace. It actually avoids the focus on power imbalances and structural issues of the work environment. Instead, we can medicalize workers as at-risk of biological or psychological issues.

They have found in these cases that these are issues related to conflicts with manager or their supervisor. Despite arguments for mental health workplace programs having positives like leading to accommodation for workers, actually the employees are usually severanced out. Write a check, severance them out.

What this program seems to be about is it’s really a case of surveying, pinpointing who’s got mental health issues, getting rid of them, and making sure that their employees know that they have to be mentally well and productive at all times.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations.

The post The Failings of “Mental Health”: How a Seemingly Benign Concept Might be Dangerous appeared first on Mad In America.

He received his PhD at the University of Pennsylvania and taught at the New School for Social Research in New York City before returning to Australia. His books include Psychology in the Bathroom, Introduction to Personality and Intelligence, Yearning to Breathe Free: Seeking Asylum in Australia, and Introduction to the Taxometric Method.

In addition to his academic writing, Nick regularly contributes to The Conversation, Inside Story, and Australian Book Review. He has also written for TIME, The Monthly, The Guardian, The Washington Post, The Australian, and two Best Australian Science Writing anthologies. Nick is a Fellow of the Academy of the Social Sciences in Australia, the Society for Personality and Social Psychology, and the Association for Psychological Science.

In this interview, he discusses inflating concepts around harm and their effects on ourselves, our experience, and society at large. He also talks about his work on stigma and biogenetic explanations of mental disorders, calling it a mixed blessing.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: You are most well-known for your work on “Concept Creep.” Could you tell us what it is and how you ended up interested in this?

Nicholas Haslam: Concept Creep is the tendency for concepts around harm, suffering, maltreatment, and things to expand their meanings over time. Over a period of decades, some of the concepts we use now to refer to a wider range of things. For example, 40 or 50 years ago, bullying referred only to peer aggression carried out by children. It was intentional behavior repeated multiple times and done in the context of a power imbalance.

People now use bullying to refer to a much wider range of phenomena such as bad behavior at workplaces among adults, behavior that isn’t repeated, intentional, and isn’t even carried out in a power hierarchy – now you can bully people above you.

I’m not sure when I discovered this idea. You start noticing patterns, especially if you’re marinating in ideas for a living, which is what I do. Everyone’s aware that mental disorder or illness concepts have broadened over time. But concepts of prejudice, bullying, abuse, addiction, and trauma have also broadened. So I was trying to identify a pattern of conceptual inflation occurring across various concepts.

Dhar: You refer to harm inflation which is related to concept creep. Why is this happening?

Haslam: Concepts to do with harm like bullying, abuse, illness, violence, hate, etc., tend to broaden. What might be causing that is rising sensitivity to harm or inflating our understandings of what harm is. So, harm inflation is a potential cause or way of making sense of this phenomenon of Concept Creep.

Dhar: What are some of the consequences of harm inflation and Concept Creep? For example, you write about polarization. I know that you have said repeatedly that Concept Creep is a descriptive category and not something that is good or bad.

Haslam: You’re right. I’m at real pains to point out that this phenomenon has mixed blessings. It has some good and bad aspects. If you broaden the definition of bullying, you identify people who have been maltreated. If you expand the concept of sexual harassment, you identify bad behavior that previously was tolerated or neglected. If you broaden the diagnostic criteria in the mental health domain, people who were suffering previously but weren’t taken seriously can receive treatment.

But there are downsides. You can become overly sensitive; you can dilute concepts of harm so that people trivialize them. You can leave people who’ve experienced severe versions of the harm to feel that their problems are being diluted or trivialized by these promiscuous uses of concepts in looser ways.

There’s an array of potential implications for defining what harm is. For example, if you lower the threshold too far in deciding what a mental health problem is, it might lead to overdiagnosis, overtreatment, and other consequences.

Concept Creep is a descriptive phenomenon. It’s happening. And whether its benefits or its costs are greater is an open question.

Dhar: If you had to pick, when it comes to mental health, do you see more dangers or positives of inflating concepts?

Haslam: I honestly think it depends on the case. There are good things and bad things. This is not the idea that people are whining too much or are too fragile. It’s just a statement that maybe we should be suspicious of narratives that say it’s all good, it’s just progressive enlightenment, or it’s all bad.

It’s a surprise to have your ideas taken seriously at all. But, on the other hand, it’s been frustrating to see that some ways people are taking up this idea are to castigate liberals (in the American sense), which it wasn’t intended to be.

I got a lot of commentaries from scholars. People my age and older tended to like the idea, and younger people tended not to like the idea. So this is not a reactionary idea; it’s a descriptive idea of something going on that might have ambivalent consequences.

Dhar: One of the consequences of harm inflation concerns mental disorders and diagnosis. I’m specifically interested in how these changing concepts of harm and widening diagnosis can change our self-concept and social identities. Can you tell us a little bit more about that?

Haslam: Indeed, there can be negative implications, but there also can be positive implications. For instance, if the concept of the diagnostic entity broadens its definition around trauma, more people will see themselves as being disordered, as being traumatized, and that can be a good thing. If you identify with a group, that can give you a positive identity, a community of people to relate to, a way to understand your experiences — identities are valuable.

But it can be a bad thing in particular cases like if the identity you take up implies that it’s a permanent part of who you are. It can be bad if it’s limiting your scope for behaving and your sense of recovering in your future. If you take on a particular identity as being disordered, people can take that as the essence of who they are and will always be, including a view of oneself as being permanently damaged, which could be problematic.

People can have a good sense of personal meaning, security, and familiarity in a particular disorder-based identity. But it can also lead to this self-limiting which can be problematic.

A terrific study done by Payton Jones and Richard McNally at Harvard showed that people who had a broader concept of trauma responded more severely to a mildly traumatic film and developed more post-traumatic symptoms simply due to having broadened concepts. So broadened concepts can have problematic implications if they become part of your identity. Then even if you have an extremely mild case of it, it may have both benefits and limiting costs.

Dhar: Dana Becker recently said when “trauma” was being broadened, as a feminist therapist, she was excited about it. But the way it got co-opted was quite horrifying to see. You write that some of the significant consequences of this can be overtreatment, overdiagnosis, and the stigma that comes with this kind of self-concept and identity.

Haslam: All of those things can happen. If you’re broadening what counts as disordered, then you are not escaping the negative perception others may have and the implications for your own personal identity. You are more likely to draw stigma from others in that case.

Dhar: Sometimes, my students enter classrooms with this idea that trauma is a thing that happens and stays with you for life. If you have trauma, then you automatically have PTSD. You write that it was specifically in the 1980s and 90s that “trauma” started shifting shape significantly. Could you tell us more?

Haslam: You’re describing something that many of us have come across. There’s been not just a broadening of the meaning of trauma but also the saturation of our culture with it — everyone is talking about it, in part that’s a good thing because our discipline has ignored how bad things that happen impact us, that our environments, hardship, and social position are powerful in deciding mental health.

But if you’re using trauma to refer to everything from being assaulted or raped down to relatively minor interpersonal difficulties, which are just part of everyday life, then it becomes this blunt instrument. Trauma has undergone the steepest increase in usage over time.

Through successive editions of the DSM, the definition of a traumatic event was broadened. For example, in DSM-III, a traumatic event was one that you personally experienced, was outside the range of normal human experiences, and was severe and life-threatening. Over time the criterion was loosened to allow indirect experiences where you witnessed someone else experiencing something or were just made aware of it. In addition, it was loosened to include events that weren’t necessarily life-threatening but might be developmentally inappropriate.

DSM V drew it back, but there has been this widening of what a traumatic event is within organized psychiatry. Languages evolve. Words will change their meanings, but those changes might have ill effects. If you’re referring to everything as a trauma, what does the concept mean?

Dhar: Again, I have witnessed the ill effects of that with my students who think PTSD is the normal response to trauma. It makes me worry about them.

Haslam: That’s exactly why this matters. There is slippage between a general concept like trauma to a purely psychiatric understanding of it in terms of Post-Traumatic Stress Disorder. People have this unwarranted assumption that because you’ve experienced trauma, you will have its repercussions for life; it’s a scar that you’ll never get rid of; it’s indelible. So there are assumptions attached to those words about the lingering, life-limiting, permanent implications of what’s happened.

Dhar: It changes your experience of yourself. You have written that mental health and illness concepts have recently become degraded and ill-defined and talked about three ways this has happened. Could you say more?

Haslam: Henry Jackson and I say that some of these concepts have changed in problematic ways in three directions, and one is this Concept Creep, this expansion of diagnostic concepts.

Another is the rising popularity of broad umbrella concepts to try to understand everything, like ‘mental illnesses’ as if they are a singular thing or ‘mental stress’ as if it was a useful concept. They’re using these broad umbrella concepts instead of more differentiated, more detailed ones. And I think you lose a lot of the specificity of people’s experiences if you use these extremely broad umbrella concepts.

The third problem is confusion about the concept of well-being and mental health. People use these terms as if they’re synonyms. Of course, there’s a relationship, but it’s possible to have high levels of meaning, well-being, satisfaction, and fulfillment while having a mental health condition.

Framing mental health as well-being leads people, if they experience a dip in their well-being, as we all do from time to time, to wrongly interpret it only through a mental illness lens. It’s a problem if we think that the absence of well-being is an illness. Losing clarity in our language around these things can lead us to pathologize ordinary experiences of unhappiness. Also, if you start to see anything less than perfect happiness as a disorder, then people suffering from serious mental illnesses will be sidelined. All attention will be paid to those on the milder end of the spectrum.

Dhar: Do you have any suggestions of how we can resist the degradation of these concepts?

Haslam: Let’s not use our words as loosely as we do. Let’s not assume that broad umbrella concepts capture the detail of people’s experiences. Not everyone likes to use diagnostic language, but there are real differences between anxiety and psychosis and depression and mania, and everything else.

Dhar: Why has this been happening? What are the causes behind these changes in definitions of bullying, prejudice, mental disorders, abuse, etc.? I know you’ve talked about cultural, political, and societal factors.

Haslam: Any cultural trend is likely to have multiple intersecting causes. At the core is an underlying shift in the culture towards a greater sensitivity to harm. Rising awareness and concern about harm could be a good thing. As you become more concerned about harm, you identify milder harms as being harmful — the broadening of the concept is just a manifestation of this rising sensitivity.

What’s causing that rising sensitivity? There are few potential contributors. One is shifting values over time. We have entered a period in many Western societies where post-materialist values are dominant over materialist ones, meaning people, on average, are not as concerned just about survival but also about self-expression, general well-being, and not just material well-being. This focus on personal suffering becomes more prominent in that context.

Maybe it reflects shifts in the degree of exposure people have to adversity. Adversity is very unevenly distributed in our society. Compared to our lives 100 years ago, most people have less exposure to serious adversity. So, it makes sense that we’ve become sensitized to less severe ones. Broadened concepts of harm reflect that severe harms have become rarer on average.

Some examples of Concept Creep are actually deliberately caused and promoted by people for activist reasons, often good activist reasons, or caused by institutions that have official definitions of concepts, like DSM definitions. For instance, you can use a concept like violence not just as physical hostility but also as something that can be done to people through words. The expansion of the concept is done to problematize things that people want to have problematized.

Some of our research shows that there really have been shifts in how much people care about harm. For example, since the 1980s, there has been a steep rise in how harm language has been prominent in English. The more a concept gets used, the more its meaning broadens. So popular concepts tend to broaden their meanings and then tend to be used in more contexts.

Dhar: Fewer severe adversities compared to 100 years ago (in certain cultures) would explain the vulnerability paradox. People in areas with more adversities tend to report fewer cases of PTSD. Also, the saturation of some of the concepts reminds me of the work of Ashley Frawley, who writes about psychological fads — these psychological ideas that bust into our collective consciousness, and then they whisper away after a few decades, like self-esteem.

Haslam: Certain ideas do catch on and get used in broadened ways, which is actually their death knell because when the content gets overused, you start realizing that it has lost meaning. But this goes beyond one or two verbal fads because there is a pattern of lots of harm concepts, all broadening around the same time.

Dhar: Let’s talk about your work on stigma and biogenetic explanations of “mental illnesses” with John Read. You call it a mixed blessing. Could you tell us more?

Haslam: We were looking at whether this very popular idea that accounting for mental health problems in terms of brain dysfunction, chemical imbalance, hereditary influences — whether that was overall a good thing. We explored the implications of holding biogenetic explanations, especially for stigma. Stigma has different dimensions. One can be how much you blame and hold someone responsible. One can be about how dangerous or unpredictable you think the person with the condition is. One can be how pessimistic you are about your chances of recovery.

We called it the mixed blessings model because studies showed that people who endorsed biogenetic explanations for mental disorders tend to blame those people less, which is a good thing. They’re not being held responsible for the problems. But regrettably, they also tended to see these folk as more dangerous, more unpredictable, and more hopeless.

If you do experiments where you lead people to believe that the cause of some problems is a chemical imbalance, they become pessimistic and averse to the person experiencing it. We’re not saying all biogenetic explanations are bad, but here’s why it hasn’t been the panacea for stigma. It may have a beneficial effect in reducing moralistic anger and blame. Nevertheless, it has a significant downside in promoting pessimism and fear.

Dhar: Did you find anything about what it does to people themselves, using biogenetic explanations?

Haslam: No, we didn’t do that in our work, but other people have. Some evidence suggests that when people with depression are led to believe that it has a biochemical cause, they feel less capable of overcoming it. They feel that the only solution is medication. As a result, they become pessimistic about their outcomes.

The clinicians who endorse biogenetic explanations were less empathic towards the people they were treating. This can have implications, not just in terms of public stigma but also in terms of a person’s self-stigma and understanding of who they are and what the future might hold. It can also shift the expectations of the people charged with treating them.

Dhar: You said there had been repeated studies that have found that biogenetic explanations increase distance, pessimism, ideas of dangerousness, and social distance. Despite these findings, why are these explanations still so popular in the general public and even amongst clinicians?

Haslam: Culturally, it’s a common way of thinking about people in general. The rise of medical understanding of a range of phenomena has been dominant. One is the massive amount of research they’ve done and the media attention given to the latest biogenetic discovery. You don’t see that when there’s a promising psychotherapy trial.

It’s also because this idea of reducing blame is powerful. If you can say that a chemical imbalance causes your problem, that is a nice simplifying story.

Dhar: You have written about psychiatric dehumanizing terms. Could you tell us what these are and what they do to people?

Haslam: Some people find ‘service user’ as dehumanizing. Others think it’s an appropriate description. Some think ‘patient’ is dehumanizing. Others hate the word ‘case’ as they think it reduces someone to a diagnostic category and avoids their individuality. ‘Treatment resistant’ is one I hate, that in most cases is picturing the person as being a deliberate problem when it just means that what you’ve tried so far hasn’t been successful.

It’s not about particular words we shouldn’t use. Humans are very good at seeing other humans as not fully human. It’s not necessarily in the words they use. It’s generally stereotypes of people as being brutish or bestial or infantilized. It’s seeing people as lacking emotional depth and individuality; this happens in many spheres of life. It’s not always revealed in language, and many people will experience dehumanizing treatments, even among people who use the latest approved terminology.

Social psychologists study dehumanization primarily in relation to race, gender, to a lesser extent, class. They haven’t done much research on mental health, disability, or other important forms of human diversity because I think there are many dehumanizing perceptions out there. Dehumanization is a dimension of the stigma that hasn’t been focused on.

People used to think dehumanization is calling people apes or vermin, but it isn’t nearly so blatant and explicit within psychology. There can be subtle, non-conscious ways of seeing people as less of humans. And if you have that broadened concept of dehumanization, you can see it everywhere. There are ways, subtle and otherwise, in which people don’t acknowledge the full humanness of the people they deal with them.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post Psych Concepts Creep Into Our Everyday Experiences: An Interview with Nicholas Haslam appeared first on Mad In America.

These themes are explored in her books, Through the Looking Glass: Women and Borderline Personality Disorder (Westview Press, 1997) and The Myth of Empowerment: Women and the Therapeutic Culture in America (NYU Press, 2005). Her most recent book, One Nation under Stress: The Trouble with Stress as an Idea (Oxford University Press, 2014), tackles the effects of the therapeutic culture through an examination of the ideological work currently performed by the stress concept. Her work has received awards from the Society for the Psychology of Women.

Becker is known for her work on the use of borderline personality disorder to medicalize women’s problems. She has also advanced some significant criticisms of the way we talk about and deal with stress in our society and noted how feminist psychotherapy had been weakened in its revolutionary potential.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: Could you briefly tell us what ‘therapeutic culture’ is and your concerns and criticisms?

Dana Becker: It is the culture we are all swimming in, infused with psychological concepts, values, and institutions predicated on those.

In therapeutic culture, the psyche is the principal object of our attention. The psychological is seen as the main source of problems in our society, and the health of our “psyches” is the ultimate goal. These shared assumptions about the psyche and its importance, and the importance of the self, shape our values, behaviors, and even institutions.

This emphasis on the psyche and the self makes the world, society’s problems, and structural and institutional problems less visible to us. Our American reliance on ideas about individualism also shapes therapeutic culture.

Dhar: How do you bring this consciousness about therapeutic culture into your work as a therapist with your clients? How does this influence your work?

Becker: We have to bring social context into therapy, but we cannot stop in the therapy room. A 45-minute session does not a world make.

For instance, women whose problems have long been medicalized see their own problems as medical problems, but we as therapists have to see all problems. It doesn’t mean that if somebody suffers from clinical depression, we’re not going to help them get medication. But as a family therapist who has worked a lot with women, I will ask not only about the family and relationship context but also understand the client’s perspective on the world and on gender—how women see themselves.

I have spent several decades doing this work, and when I started, nobody ever came in saying, “I’m bipolar.” You never heard that. Nobody was doing self-diagnosis. As I continued to work, women would come in and say, “my mother thinks that I’m bipolar.”

I don’t like people calling themselves a diagnosis. They don’t say “I have bipolar disorder” these days. They say, “I am this, and I am that.” In the 1980s, there was a book called Mood Swings, and some clients and their parents or partners would read these things and immediately say, “Oh, if you’re angrier this day than the last day, that must mean you have mood swings, and that means you’re bipolar.”

For me, as a therapist, it is about finding out the context in which those ideas arose. What’s going on there? Sometimes the woman feels justifiably angry, but her partner or parents say, “there’s something wrong with that, and that means you have mood swings,” which means a diagnosis. This is how emotion gets medicalized.

I am not saying there is no such thing as bipolar. When you take a position like this, people always criticize; it is not as extreme as people assume. As a therapist, you have to delve deeply enough to understand the context of what the client is bringing.

Dhar: So, therapeutic culture is not just psychiatry but a larger societal and cultural narrative that exists, changing our self-definition. I have students who come in saying, “I am this or that (a diagnosis), but my therapist won’t give me a diagnosis, but I know I am this.”

Becker: There are other concepts, too, not just diagnosis. I had clients saying, “I’m feeling really terrible this week. I’m having a pity party.” Where do women get the idea that when they’re sad or upset about something that’s going on, they’re being self-pitying? The pity party aspect is denigrating.

For a therapist to not be curious about that is problematic. If I understand something about gender socialization, then I see that that woman bringing that idea to me brings a whole world of gendered associations.

Dhar: The first thing that we do when something happens is look inwards and look at our emotions and not bigger, external, systemic issues. Why do you think these psychologized or therapeutic narratives have become so powerful and pervasive? Is it a matter of who they benefit?

Becker: First, there certainly is a benefit for the psychological professions. There is a benefit in the medicalization of human problems. There’s no question about that. When the Diagnostic and Statistical Manual first came out, it was less than an inch thick, and now it’s so bloated that anything can be called a psychological problem. The professions have benefited greatly, and the number of psychological professions has proliferated. You have professional counseling and social work, which used to be a different kind of profession.

The other part is about the gendered nature of ideas about emotion because women have always been the primary candidates for psychotherapy, self-help books, and psychological advice. With Oprah and others, it became popular to talk about problems that had been hidden from public view. Also, there is the veneration of science—from the 19th century onward, there has been a tremendous scientization of all phenomena. This also influenced medicalization.

Freud himself never wanted psychiatry to become a medical profession. But, in America, it was decided that you had to become a medical doctor to become a psychiatrist.

Dhar: Recently, you wrote about the absence of context in feminist therapy, which, you write, has become toothless. Could you elaborate?

Becker: In a sense, there is no feminist therapy today, no people who call themselves feminist therapists. There are people who are feminists who do psychotherapy, but that’s different.

In the beginning, there was consciousness-raising—a very middle-class, white phenomenon. This was a critique of therapy for women—do we really want people to look inward rather than outward for the source of their problems? Fairly quickly, the ideas that consciousness-raising brought to therapy, which was bringing social context into the therapy room and helping women to achieve greater activism outside the therapy room, quickly became subsumed as professionalization took over.

It was a fairly short period. Today for women, trauma has become the watchword. Trauma and women have become a bundle that a lot of therapists who consider themselves feminists see together—”Let’s figure out how you’ve been traumatized.”

Now, talking about traumatic events has become much more destigmatized, and so have psychological problems, which is very helpful. Even back 1980s, it was rare for therapists to ask a woman if she’d been sexually or physically abused. Now it’s routine. It is good news for these problems to come out of the closet and for the social and societal context of psychological problems to be visible.

Having said that, when everything in the world is labeled traumatic, there is a loss of meaning. If I’m traumatized because I have too many text messages as opposed to having been a prisoner of war… These are things that are labeled traumatic these days, and the idea of trauma has lost meaning.

The other problem is that those who practice therapy, particularly in America, assume that every disaster induces trauma in everyone. This is not the case. For instance, after the tsunamis that happened a decade ago, American psychologists went over to offer psychological help to the victims of trauma. The people said, “we don’t have a house, warmth, and family has no food. And you’re talking to me about being traumatized.”

The events of 9/11 were cast tightly within the trauma narrative. Even ten years later, the American Psychological Association’s American Psychologist had to put out an entire issue which was a research apologia for all of the psychological work that had insisted that everybody was going to be traumatized. Everybody who had witnessed it, or seen it on TV, or the exposed children—everybody was going to suffer. The research found that this was actually a very small percentage of the population. But now, when research is done, a high percent of the population will say that they’ve experienced at least one or more traumatic events in their lifetime.

Dhar: It ties with Ian Hacking’s idea of the looping self—a concept in a popular narrative that changes your self-definition and then your experience. I wondered if trauma is the next big thing after the medicalization narrative. Can you give examples of how specifically trauma has been co-opted and used to further medicalize women’s problems?

Becker: In the DSM III, events that were causative of PTSD had to be considered outside the realm of human experience. Many feminists agitated for these criteria to be broadened so women’s experience of sexual and physical abuse would be included. Initially, I was really taken with this because I was studying the borderline diagnosis, which I can’t abide by, and PTSD was the only diagnosis with actual external situational causes. I thought, “this is wonderful.” So, we expanded the diagnosis. It changed my position.

I did a complete 360 and was horrified at how often the PTSD diagnosis was just slapped on women. They didn’t meet all the criteria. It’s not to say we shouldn’t take note of the abuse and its ill effects, but it became another tool to medicalize women’s suffering. This is how I think about the trauma narrative feeding into the PTSD diagnosis.

There was a terrific bit of research done by Jeanne Marecek and Diane Kravitz back in the nineties where they interviewed those who called themselves feminist therapists. They were saying, “This is the only diagnosis that I ever give. It’s not that I give it to every woman. I tell people, you have PTSD, and this is a normal reaction to trauma.” First of all, PTSD symptoms aren’t a normal reaction to trauma; otherwise, we wouldn’t be calling it a disorder. PTSD as a diagnosis had been much broadened.

Dhar: PTSD being a normal reaction to trauma doesn’t translate when we look at other places in the world.

Becker: No, culturally, it’s just absolutely terrible.

Dhar: And the second issue is we necessitate verbalization—that talking about trauma is the only healthy way to deal with and process it. You have to go to a professional. It just doesn’t work like that.

Becker: No. As cultures, we decide what is normal and what is not. Derek Summerfield talks about this—in a society, we decide what we say we should have to endure or not.

After the bombing of London, the Londoners were not calling themselves traumatized. There wasn’t any language, the there was no narrative for that. There was an attitude of keeping calm and carrying on and all that. Even in war, shell-shock was considered a humiliation. All of this was terrible, yet it was so different from our 9/11 response—a different discourse.

Dhar: In One Nation Under Stress, you write that the Psy-disciplines focus on the effects of stress, on being stressed out, and not always the causes. You write our individualist culture plays a part. Could you say more?

Becker: Making a bridge between trauma and stress, both concepts now share the same kind of problem. The cause and effect are conjoined in a way that makes them one, but it’s the emotional response that we focus on. So, the thing that stresses you out and your reaction to it are both ‘stress,’ but we focus on the feeling of being stressed.

In the book, I talk about this crazy American idea of balance. Women are targeted for this stress discourse. For instance, you are a working mother doing shift work or a professional woman. This discourse of balance applies to everybody equally, even though the stressors are quite different. The professional woman who is a CEO can have a nanny and is not in the same position as the woman working crazy shifts with no notice and thus no childcare. But we’re supposed to achieve a balance between what we’re doing out there, what we’re doing in the family, and take really good care of ourselves, no matter what the outer stressors are, what the context of our lives are. The idea is that if we can do that, we won’t be stressed out and angry and will be able to take care of everything.

Care has been a women’s province in this country, particularly since industrialization. As middle-class women flooded into the workplace in the 1980s and beyond, the expectation of care did not change. But now, the expectation of balance has become another weight on the shoulders of women.

I can use myself as an example. I never called myself stressed out the entire time. I had no money. I was a single parent. I was doing my doctorate and taking care of my son, a dog, a school turtle, everything else. And my expectation was that I did everything perfectly. So we moved on to this idea about balance that we should be able to juggle multiple things. If we can’t, it’s our fault. We blame ourselves, and we should buy more commodities to help us. If you’re poor, you don’t have the time, money, or support to do the caretaking things that middle-class culture tells us we should do.

Dhar: That’s where the narrative of self-care enters. I have to break it to my students that candles in a bath will not solve problems that emerge from poverty.

Becker: And when we call it stress, we then flatten this out. If we say we’re stressed, then it’s my problem to solve.

Dhar: So, stress is one way to individualize this? And then the diagnosis from borderline to PTSD are also ways?

Becker: So many of the women who are diagnosed borderline are women who have suffered extreme abuse, neglect, and invalidation. Stress is a non-diagnostic tool for those women who, as many of us do, take our cues from popular culture.

Dhar: Yes, I have a three-week-old baby, and whenever I feel overwhelmed, my mind goes to postpartum depression. I have read so many criticisms of the diagnosis. Plus, I have a broken ankle, I am away from home, and need to join work. But despite knowing about these important external factors, even as a critical psychologist, postpartum depression is the concept that keeps coming back into my head. Even if you are aware of them, the power of these narratives is strong!

Becker: If we’re just stressed out, we blame ourselves for not taking better care of ourselves. Then there’s no need then to go outside and ask, “Why are we still the only Western industrialized nation that does not have any paid family leave?”

And the most stressed-out women don’t have time for activism. This is another part of the problem, “I’m too stressed to get out there. I don’t have time to call my congressperson.” It’s a way of easing our consciences. We can say, “I’m stressed out; I’ll put on some candles, take the bubble bath, eat more kale smoothie.” There are women in our country who don’t have the option to do those things or have any help. And as you suggest, we’re not looking to the community as you would if you were back in India.

Dhar: There is a recent conversation around structural determinants of mental health, how things like poverty, violence, racism can be psychologically damaging. I wonder if it’s going to get co-opted and absorbed—if it’s just paying lip service, and the answer is again individual therapy. What do you think?

Becker: That’s what worries me. See what’s happened in poor neighborhoods in the public school system. We understand discrimination, the effects of poverty, of bullying. We know these things contribute to a child not doing well in school or acting out. What do we do? We call the mother, only the mother.

It’s the mother’s problem. She has to take the child to therapy, who is often not a family therapist. So, the child is with the therapist, who is very understanding for 45-minutes a week and then goes back into the same environment. So, the mother doesn’t have support or understanding of what’s happening in the therapy because she’s not included in that.

Studying stress, I found some really crazy popular articles about poverty and depression. This really worried me—seeing how these things are getting co-opted by the medical establishment—”Let’s treat the depression. So many people who are poor are depressed.” It’s the same as the trauma and stress problems—the external cause becomes shunted aside for the emotional after-effects.

It’s so much easier to deal with the effects. We don’t have to deal with discrimination, poverty, racism, with differences in tax dollars going to school in poor neighborhoods. It creates a perfect environment for us to individualize these problems.

Dhar: Since we are talking about ignoring larger systemic issues, let’s move to positive psychology, which used to be very popular. You have raised concerns about positive psychology. Could you elaborate?

Becker: Just like with PTSD, initially with positive psychology, you would think psychology is turning to context. Jeanne Marecek and I argued that positive psychology bolstered the psychology profession at a time when great inroads were being made through managed care, social workers becoming therapists, the professionalization of counseling, etc. The problem was that positive psychology is just as acontextual as any other form of individual psychology.

Positive psychology is yet another of the many ‘adjustments psychologies’ that we have loved in America. By adjustment psychology, I mean those movements like the mental hygiene movement in which the goal was to produce these happy, healthy, “well-adjusted” individuals. For example, a woman who can take care of herself and her family without a lot of complaints and anger. That would be an ideal adjustment.

So the problem is that if you talk about “what kinds of families result in children who flourish,” and that’s the quotation from Seligman about positive psychology, you can’t do it without thinking about the environment, the institutions, and social context. The nuclear family is much too small an environment to look at.

I’ve been trained in multidimensional family therapy, which looks at the much larger context of families and their connections with broader institutions. We can’t simply focus on the dynamics of a family and then say, “We’re going to help that family to create wellbeing among children.”

Another example is Martin Seligman’s huge contract with the United States government to bring positive psychology to the military. For example, you have a soldier who’s going off to war, who is afraid of being killed, who’s going to presumably kill other people and watch them die. You’re going to inoculate them somehow with positive psychology against these horrors. But we don’t talk about war or male socialization and how we create warriors. We’re just going to train people to be more resilient.

The concept of moral injury is another internalization of a much larger problem. When the military talks about moral injury, it’s individualizing a problem that’s created because there is the existence of war and those political decisions. We only talk about the moral injury to soldiers, and anything that uses the medicalized language of injury brings us into the land of trauma. Again, our entire discussion, in many ways, just curves in upon itself.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post The Medicalization of Women’s Suffering: An Interview with Dana Becker appeared first on Mad In America.

Most recently, he received the 2022 Distinguished Service Award from the American Psychiatric Association. Di Nicola’s most recent book Psychiatry in Crisis (co-authored with Drozdstoj Stoyanov) offers a critical analysis of the discipline and points to the glaring gaps that must be addressed.

Ayurdhi Dhar: You have written the manifesto on social psychiatry. What is social psychiatry?

Vincenzo Di Nicola: It’s a very important part of my personal and professional identity—a way of looking at the world.

As a child psychiatrist, I spent my entire career looking at the kids and their families through three lenses: child development, families, and culture. I see social psychiatry as the bridge between different domains of expertise, not necessarily privileging one or the other.

One of my major critiques of the history of psychiatry is that we always privilege one thing. We need more synthesis and to build more bridges among ourselves, among our own theories and schools of thought.

Social psychiatry can be a bridge between fields of expertise but also in terms of how we imagine people as personal and social beings—how does someone develop an identity, how do we develop a sense of community, how do we imagine belonging? It’s a bridge.

Dhar: You write about context. How have we traditionally studied humans out of context? Can you think of some examples where we study people out of context and what are the consequences of doing that for the person and for the discipline?

Di Nicola: So, only looking at behavior, you will take a disturbed child and say “How can we decrease something common like issues in terrible twos or issues like autism, phobias”. Many studies show that behavior therapy does help, that you can decrease negative behaviors, self-harm, avoidant behavior, etc.

The problem is that these things are not very satisfying on a subjective level, neither for the therapist nor for the patients. So, behavior therapy was useful in the context of what learning happened to bring the child to be fearful. But on the other hand, the salience of a parental figure giving a reward or being the source of trauma was not taken into account. We didn’t ask questions like that and I became very dissatisfied with that.

I had my own personal experience with a terrible snake phobia. I was in training in behavior therapy and thought, “this has to mean something.” In five sessions of systematic desensitization, I was slowly exposed to a snake, which happened to be called Monty and it was a Python. It was five sessions of very slow exposure. In my mind, there was a curiosity but the theory and the therapy couldn’t explain it; it didn’t address my thoughts, my feelings, they weren’t interested in that, and they didn’t have answers to what a snake symbolically represents. It was unsatisfying because I wanted to know “Why do I have this darn thing? How come I’m afraid?”

That curiosity took me to the Tavistock clinic, which is based on psychoanalysis, and my therapist listened to the questions with great curiosity and respect. I felt really understood even before finding any possible answers because the questions were validated. It opened the door to meaning.

If we want to only look at behaviors, we don’t see the whole context. We went from only looking at behavior to only looking at the brain, adding cognition and emotions. Psychoanalysis persisted; looking at the unconscious, drives, what these things represent, and how to make sense of them.

As a field, we went on this terrible journey in the last 20 years, where we said that these questions were no longer relevant. It was exciting in some ways academically and intellectually, but terrible in human terms. Along the way, we came up with other blind alleys like neuroscience—it is fascinating but it’s not psychiatry. It is very important but it doesn’t answer these other questions. Everything is useful but we have to know what we’re using them for.

Dhar: This experience you had of feeling heard, a more dialogical and relational experience, is this what you mean when you write about slow psychiatry? Could you tell us about slow psychiatry and what does it look like in practice, in life, in the clinic?

Di Nicola: In 1986, McDonald’s wanted to open a restaurant in one of the most beautiful historic sites of Rome and there was a spontaneous revolt against it. A guy called Carlo Petrini, a kind of leftist journalist in Italy, created this incredible movement called the slow food movement and eventually it became part of the whole slow movement. I started asking myself:

“Why do we need to speed things up? Why do we even need to think about intervening? What difference would it make?”

If you did slow psychiatry, what would we do differently? Everything and nothing is my answer. You could do the same things you always do, which I do. I didn’t throw out anything, including sometimes short-term therapy, but I’m very reflective about it. I don’t automatically value speeding things up as better.

Let me give you a lovely anecdote from Jean Piaget who is considered a really great child psychologist. He talked about stages he observed in his own children. Piaget was known for his very methodical and elaborate observations of children. People would train with him, go to him and say, “Professor Piaget, can we speed up the process? Can we make children go faster? I want my kid to write at three, to draw better or improve their motor skill, start learning the violin like the Suzuki method at three, and so on.” After a while, he called this the American question—how to speed things up. Why do you want to speed up a child’s development, why not let the child enjoy being a child? That’s an embodiment of what I’m talking about. Why do we want to speed things up now?

Practically, people say the person’s suffering and you want to relieve suffering and I value that. If you have pain, you want to relieve the pain. But if you can’t change the pain, and if you can’t get rid of the phobia, and if you can’t get rid of the voices in your head, can you help people not feel like they’re crazy? Can you help people feel like there’s nothing wrong with them, like they’re not bad, deficient human beings? Can you help them learn to live with it, even if that’s all you can offer? I would argue that’s a lot.

If you say why is this happening to me? We don’t have answers to that, but we can listen to someone complain about the pain and the sufferings of their life? We can help them find meaning. We can accompany them on their journey to find meaning. Slow psychiatry would mean you can do everything the same, just at a different pace, and in a different way.

Or you could also discover new ways of being with other people. Do it more slowly, calmly, maybe with fewer words, more spaces, with fewer what Foucault called dispositifs or tools. Maybe we could listen to people more; today in Montreal, a family doctor sees a person, if you’re lucky, for 12 minutes.

When you try to speed things up, people feel unheard, disqualified. Many of the things we deal with in medicine, in life, we don’t have quick answers for, but the culture, the society, the world we live in privileges quick fixes. They ask, “are there tips and tricks you can teach?” I can suggest them but will it work for your kid? Will it work for you? We’re going to have to work through it. That’s what slow is about.

Someone who’s suffering has a story to tell and they need to tell it, but they need an audience. In narrative therapy, recruiting an audience means you have the time, patience, and capacity to learn and listen to someone’s pain.

People, even experienced therapists, move very quickly from trauma to transcendence. They listen to the story and they immediately reach for how can this person get over their trauma? First let’s have the capacity to sit with the person suffering, to experience it for 20 minutes or maybe an hour or five hours. I think it’s enough to listen and help them find meaning for their pain and then, if possible, to find ways out. But to immediately reach for transcendence is to disqualify—to not honor their story.

That’s slow thought: giving people a chance to tell their story. By listening to people’s pain, by giving them time, that itself is a gift that we owe to each other as human beings, never mind as therapists.

Dhar: Trauma is one of my areas of research and I understand the importance of being there with suffering, but there is often an implication that the only way to be there is to talk about it and I come from a culture where that’s not always true. Both my grandparents and parents were part of separate refugee conflicts and the problem is that when professionals intervene, they insist that the only people who can hold your space are psy-discipline professionals. It can’t be people in your community. When we meet during weddings and funerals, we talk about our loss in the language of grief and not as a frozen traumatic memory. The problem is when the discipline necessitates that witnessing has to be done only one way—pain must be verbalized and only to a professional.

Di Nicola: The people who do this work are very aware of that. There are people that are guilty of acting as if (and I don’t think they believe it) only professionals can be there. I think they just feel duty-bound to offer something.

Two people from France, both doctors and anthropologists Didier Fassin and Richard Rechtman, wrote a wonderful book called The Empire of Trauma. They took one example of a huge chemical factory that exploded. A lot of people were hurt and there was an assumption that people would be traumatized. People come in with entire SWAT teams of psychologists, exactly what you’re saying: “people are necessarily traumatized. They need to be debriefed.” They criticized that very strongly.

I spent a lot of time thinking about this—we don’t think that professionals are the only ones who can help. The vast majority of human pain and suffering is addressed, or not, by the resources of the individual: the family, the community, the religion, the elders, and so on. Sometimes there is shame, disqualification, invalidation. We try to be aware of that through medical anthropology, cultural psychiatry and to construct a way where we don’t let people fall through the cracks.

But Fassin and Rechtmanalso say we should not impose on people. People got fed up—a person would be interviewed three and four times by different people. Some people would say, “But I’m not traumatized. I’m fine. Let me be!” A problem with any institution is it develops a life and logic of its own. So, because we have psychiatry, we must send out psychiatrists.

My son who’s a lawyer, says, “Dad, get to work. There are two or three people on the planet that don’t have a label yet.” I think it’s very funny but also sadly true. In my lifetime, between DSM 2 and 5, we went from a little pamphlet-like spiral-bound 50 or so pages to DSM 5 which is a thousand pages of tiny type, trying to document every possible vicissitude. It’s not psychiatry alone that’s responsible for that. For people to be paid, to have certificates for school or work, they ask a psychiatrist to give them an assessment.

I don’t think we should impose categories on people to validate them as human beings or as having special status based on what one person says about them, like a therapist, psychologist, or psychiatrist. I agree with those criticisms, but that does not mean that some of us aren’t motivated to alleviate suffering. I work in a public system and we have easier access to care in Canada, compared to the United States. I don’t have to compete for patients to build up a business. Here we don’t need a thousand pages of DSM 5 to justify what we do. I can just see people and write nothing in their charts. Eventually, someone will complain that I should write a diagnosis, but I don’t have to justify it like they do in the United States. So, the social and administrative logic changes a lot. Back to trauma, no one owns trauma!

Dhar: Your new book is about Psychiatry in Crisis. What do you mean by psychiatry in crisis, and what does this crisis imply on the ground for both practitioners and patients. How has this crisis impacted their lives?

Di Nicola: I am a professor of psychiatry and I did my graduate work in trauma at Harvard but I was unsatisfied. I learned a lot, but there was a lot I didn’t understand. That’s what propelled me into philosophy.

In looking across from another place and discipline at the practice, it became very obvious to me that not only are patients suffering and the public dissatisfied, but the psychiatrists themselves are very dissatisfied and it shows up in funny ways.

When I was young, people would go to general meetings and inform each other and different perspectives were presented. Now, people go to very specialized meetings, like a neuroscience or neuropsychiatry research meeting. In general meetings, there are no confrontations and people have actually given up on having a consensus. I miss the debates when psychologists and psychiatrists would go at each other. At case conferences, there would be psychologists, social workers, medical anthropologists, and psychiatrists with different perspectives. People were listening to each other. They don’t even listen to each other anymore. So, part of the crisis is people are almost afraid to express their dissatisfaction with the lack of a shared general theory.

The standard model of psychiatry in my generation became the DSM, which was ridiculously successful. You can’t go to any country where the medical students do not carry around the translated version in their pockets. When they talk psychology or psychiatry, they mean the DSM. It is very successful with terrible consequences.

The other part of the standard model was the biopsychosocial model. But, as Allen Frances says, it became the bio-bio-bio model. Many well-intentioned, goodhearted practitioners would say, “that’s not true about me,” but it is true in how money was given, what was valued for academic promotion, how people got power in their departments for their line of research, or in even clinical practice. When I was a kid, psychiatry meant clinical psychiatry. What was valued was being a fine clinician that could listen to people, and that’s not valued anymore. Now if you don’t do certain kinds of research in a certain kind of way, you don’t get a promotion.

In psychiatry and psychology, those of us who pretend to help people, we need to have our feet firmly in the clinic. So, the crisis of psychiatry is that we don’t have a shared consensual model, and there’s a sense of disquiet. People are listening to their patients and they are talking about side effects and I’m worried about it too but you cannot throw the baby out with the bathwater.

Let me talk about the in-house problems of psychiatry. We have three critical gaps. We don’t have a psychology, by which I mean a theory of people. How do people function? What is the psychology of psychiatry? It’s not that we don’t have one, it’s that we have many. There’s a psychology associated with behavior therapy, with cognitive therapy, even in psychopharmacology and neuroscience. It’s become about genes and brains, what Raymond Tallis decries as neuromania and Darwinitis.

We don’t have a general psychology. What’s the practical implication of that? Instead of saying what was younger Vincenzo’s snake fear about, we have a psychiatric diagnosis. He has a snake phobia. Now that’s not too bad. But what if I said I had a schizophrenic or psychotic experience, where I thought people were against Italians in London because of World War II. Inside the experience might have been terror, paranoia “Oh my God, they’re going to find out that I’m Italian, my grandfather was a fascist, and they are going to arrest me.” If you listen to people who are having experiences like that, it would take a long time to discover the logic.

Dhar: Are you saying the diagnosis can foreclose certain possibilities of dialogue and relationality?

Di Nicola: Absolutely. It happens all the time. That may not be the intention of the person but either because of the vagaries of the situation, or going too fast, or because words hurt and people feel disqualified, discredited, and devalued—it’s very delicate. So, we’ve learned to be careful with some experiences, but not all. It’s not very disqualifying to say you have a phobia but it’s still rather difficult to tell people in public that I hear voices.

That is a consequence of not having a psychology—everything automatically becomes a pathology. Not only do we not open space to listen to a person’s experience and help them develop a narrative, but we have a very diminished view.

When I was in training, never mind the patients, the residents would pester each other with labels: “You’re manic today. You’re paranoid.” These are adults and they didn’t know better than to call each other crazy. If they don’t respect each other, what can we expect them to think about other people?

The second problem is we don’t have a theory of psychiatry. What we have are competing models of what should dominate: the community mental health revolution, the psychopharmacology revolution, now the neuroscience revolution. Each of them represented a way of thinking. Each of them open doors but when you open some doors, you close others.

In the field of psychiatry, when we open one door, we suddenly forgot about all the others. The psychopharmacologists decried family therapy. People doing research on schizophrenia—like Robin Murray—later acknowledged that, in his own department, there were powerful models of family interactions, and he kind of ignored it or dismissed it, just like perhaps the social psychiatry group dismissed the genetics and the biology.

The problem in psychiatry is not that we don’t have promising models; it’s that people come along and they want to dominate the field. We have too many theories and we don’t have a model. From a scientific progress point of view, it’s great to have a rich debate but people are not talking to each other. What’s the impact of that? People are in their little corners.

The third problem is we don’t have a theory of change. We have descriptions of change. We have competing models. We have many rich and promising therapies that are sensible but there’s no integration. We have these critical gaps. So why is that a problem for the people? In Montreal, depending on which child psychiatrist you see, you might get someone who prescribes medications in a responsible way or someone who wants to do psychotherapy or cognitive or dialectical behavior therapy. Is it justifiable? It’s rich from the point of view of offering diverse options to people but for the person knocking on the door and not knowing who’s going to answer, it’s a bit of a puzzle.

I saw a young girl recently with a clear and strong version of obsessive-compulsive disorder. I asked for cognitive behavioral therapy because that’s what the data and the clinical experience show. The person who does that is going to be on sick leave soon. So, they said what about psychotherapy? I think the world of psychotherapy but the data and clinical experience suggest that if you want alleviation of the symptoms in a very reasonable time, it’s much more effective to use cognitive behavioral therapy. Even within a service, you have these dilemmas. The problem is we don’t have enough evidence to resolve all our clinical problems.

It would take a very well-informed consumer doing research, going online, and asking people’s opinions to make an informed choice. Is that desirable? Would it be better to have a uniform model? They did that in the National Health Service in England, where you go for a kind of mental health problem, you will get cognitive behavior therapy because that’s what the government says. I’m also not very comfortable with that because it takes away freedom and a sense of choice. There are no easy answers to this, but those are gaps. This is why I think psychiatry is in crisis and I get resistance.

My colleague from Bulgaria and I had different starting points but we ended up with very similar disquiet about where psychiatry is and where it’s heading. We went to conferences and started talking.

I got three kinds of answers from psychiatrists. One, a very influential senior psychiatrist said that psychiatry has always been in crisis, for 200 years. It was founded under crisis, which is true. Another person who’s a very famous family therapist said, what crisis? He has basically opted out of psychiatry, so for him, the crisis isn’t there because he doesn’t confront these conundrums anymore. Most people were in between, saying we have problems but we need to adapt. And because of the polarization, especially in North America, people are turning to these single messages—cognitive behavior therapy or social psychiatry has all the answers! I do not have the answers; all I am saying is let’s round out our practice by creating context and understanding what is social.

Dhar: Before we end, are there any last statements or something important that you would like to touch upon?

Di Nicola: In psychiatry, some of us are ambitious or arrogant enough to believe we can get to the bottom of human experience through ontology, which means being, the way we are in the world.  But the problem is convincing people that the questions of psychiatry will be answered by looking at being, understanding human beings as they are.

I’m a little optimistic that people are finally coming around. DSM is an asset, it has value, but it’s the same as translating questionnaires to other cultures. It’s got limits.

Getting to the heart of what people experience on their terms is a very different beast than taking Western ideas and exporting them around the world. I’m not interested in exporting what we do around the world. I’m genuinely curious about how Indians, Chinese, Taiwanese, and people in a small village experience the world.

Does that mean that we’ll never have the very thing I’m looking for? A consensual psychology-psychiatry-psychotherapy. Maybe. So be it. But I would prefer for things to be valid, speaking to the real human experience, something authentic. This is what slow psychiatry and psychotherapy is about.

****

MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post The Crisis in Psychiatry and The Slow Way Back: Interview with Vincenzo Di Nicola appeared first on Mad In America.

Her interests include understanding different ideas of self, especially in indigenous communities, and how our ignorance about these differences harms people we say we are healing.

Lacerda-Vandenborn notes that “Psychology is not a very reflective discipline.” This is a conversation about lost indigenous children, psychology’s blind spots, and how we can address these concerns with epistemic humility.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: Dr. Vandenborn, welcome. Could you tell us about your work on the decolonization of mental health? How did you become interested in it? Did you find something missing in the way Psychology was being practiced?

Elisa Lacerda-Vandenborn: I would like to start with a territorial acknowledgment of where I am. I am currently in Calgary; the indigenous name is Mohkínstsis. I am working in the traditional territories of the people of Treaty 7 region in Southern Alberta, which includes the Blackfoot Confederacy of the Siksika, Kainai, and Pikani first nations, also the Tsuutʼina first nations and the Stoney Nakoda, which includes the Chiniki, Bearspaw, Chiniki, and Wesley first nations. Mohkínstsis is also the homeland of the Métis Nation of Alberta region three.

Decolonization is a process of correcting the oppressions that have been imposed on indigenous peoples — dismantling the structural, ideological, historical, and cultural beliefs, practices, and values that have cost indigenous lives, wellbeing, resources, culture, land, families, and communities. In terms of mental health, it is about rethinking how our Euro-centric practices have contributed to indigenous peoples’ suffering and continuous colonization.

We can challenge the single view that permeates our practices in mainstream psychology, such as the over-reliance on a biomedical model — defining health and mental health as the absence of illness or disorder. Rather we think of individuals as holistic beings where mental health is only one aspect of emotional, spiritual, and physical health. These are not in isolation, but they are intertwined to a sense of place, to land, to the teachings of the land, to ancestral teachings, and to a sense of the history of that particular community.

About how I got into this. These things have a way of finding us. I became attuned to it after being a newcomer to Canada 18 years ago when I felt that I lost a lot. I remember being in my undergraduate years with 35,000 students and feeling the most alone I could feel. There was a profound sense of loss of community, loss of not being myself through language, and being in the space where I was the odd one out.

When I sought counseling, all of this got located in my inability to cope and low self-esteem. I thought it was quite interesting because I was really mourning the sense of having a big family, my cultural references, ways of being, and it was being located within me. I thought that there was much more to the story that wasn’t making it into the office. I thought there had to be another way of thinking about this, and I’m glad that I resisted that approach and assessment. That misalignment made me research concepts of selfhood.

Dhar: We often portray indigenous communities as deficient and suggest that they do not access mental health services because of stigma, but we don’t look at how the services offered can harm. People can get caught up in the narrative of “it’s a self-esteem problem within me.” You talk about these Euro-American values in Psy-disciplines, and when we export them to non-Euro-American populations, there is this disconnect. Have you seen cases where there was an effort to put these one-size-fits-all services on people?

Lacerda-Vandenborn: Unfortunately, there are plenty of examples of that. For example, the child welfare system has a very individualistic lens. We take these intricate family systems and intervene in a way that really detaches them from themselves and their context.

It’s not uncommon to take families going through complex situations and treat them individually and ignore the larger context. For example, a family experiencing domestic violence — if the mom seeks any support, she is then analyzed as being someone that either has the strength to cope or not. We look at children separately. When families access social services, they are literally placed in different branches. We often end up with children in care. Psychology is intertwined in this process because the intake, the assessments of the mental health of children and of the mom, are provided from a psychological apparatus.

We treat individuals separately and create this big problem where children are placed in care, and the chances of mom actually getting children back, drop by 85%. So, you instantly create more harm when you don’t look at families as systems and their context such as poverty, lack of access, social support, afterschool care. We take something with so many social references and simply attribute the problem to the coping mechanisms of the mom. We are intervening and separating mom from a child over the perceived notion of risk attributed from a Euro-centric perspective.

Dhar: A big relational and systemic problem is reduced to “the mother is narcissistic” or “co-dependent” — these psychological terms that individualize problems?

Lacerda-Vandenborn: Codependency is used a lot, and major depression, or a mother being too anxious or that the child’s socio-emotional needs are not being met. These things serve as a justification for cases where the custody can be removed, but little attention is paid to the fact that mom is deeply in need of support. Our system has this built-in adversarial approach, particularly in family relations where we need someone who stands as the perpetrator and someone as the victim. There is very little room for the family’s needs in the context of the community.

Dhar: If you had to pick one thing that the current mainstream mental health system completely ignores or lacks, what would it be?

Lacerda-Vandenborn: Folks are very comfortable continuing their practices as they have been, even though there is a sense that those looking for mental health support are not getting everything they need. People may feel hopeless about “what I can offer it’s not enough.” There is a sense of exhaustion about engaging in deep work to find where our approach, assumptions, and concepts are coming from. Do you think you really addressed the needs of those who are non-white, from lower socio-economic status? We are still quite comfortable refraining from problematizing where we stand, even though we know it’s not quite working out.

We may lack the entry points for this discussion. Universities have a very large role to play here because I believe it’s lacking in our educational system. I was lucky enough to be in theoretical psychology, questioning how we conceptualize things. What are the tools, where did those tools come from? What are the ethics of these approaches? We fast forward to diagnosis, assessment, naming. What’s missing is the relational piece.

That’s where social justice really comes in because we need to attend to our positionality and our intersectionality every time we enter a particular office. We like to think we are all humans, and that’s one aspect of it, but there is power; the analysis of that power is missing.

We keep spinning our wheels because we’re desperately trying to change the practical end of things, but if we don’t revisit our philosophical traditions and theoretical assumptions, it will be an exercise of frustration. That’s why those on the frontline feel the exhaustion because they see practice being changed over and over.

Dhar: The cultural competence idea can be a Band-Aid solution. You have done your research with community-led family group conferencing. Could you say more about this?

Lacerda-Vandenborn: Family Group Conferencing (FGC) is an approach that came from the Māori in New Zealand. This is an intervention with a much larger understanding of family, the concept of whānau. We understand that our uncles, aunties, and grandparents are part of the clan. They have a role and a responsibility in childbirth, child development, and rearing. Everybody has a responsibility to this child. I paid attention to its use in child welfare with an organization in Winnipeg, Manitoba, called Ma Mawi Wi Chi Itata. This is a grandmother organization that has been working with FGC since 2000.

In this program, once a child has been flagged in the child welfare systems, where a family is identified as at risk, instead of blaming mom and dad for their difficulties, the practice is to bring everybody important in that child’s life together. With indigenous communities, the main category of involvement in child welfare is neglect, which is intimately connected with poverty. So, we bring all of the important people in this child’s life and ask, “What is the support that you need to be the best parent that you can be? How can we be a support?” Because we all have a responsibility to this child and family, we are all part of this.

In the mainstream system, families are seen as the focus of deficit. In this program, you give agency back to the family to say, “You will create the plan. These are some of the concerns, but it’s up to you to create a plan that is sustainable, that addresses your needs.” These are relational needs, mental health needs, housing needs, employment needs, support with nutrition, etc. We say, “if these are your needs, this is what we can offer.”

Instead of a family going from place to place to find the services they need, everybody is in the room, and everybody commits to the well-being of this child. In this program, unlike the national average in Canada’s child welfare assistance, where the reunification rate is 15%, this program unifies 80% of the families without reentries into the system. We put the well-being of the families on the families; they are the experts of their lives, their relationships — they know their needs. So, instead of the child welfare system imposing rules that ignore the context of the family, we listen and then we intervene.

The mentors are actually part of the community, so they’re not psychologists. They have experience of what it feels like to be in a place where discrimination is part of your daily life. People lack support and often move away from their communities to access services in a bigger center such as Winnipeg. When they do, they lose a lot of their community and support.

So, it’s about placing agency and loving, and I know this is a very unpopular word in psychology, but how do you love families back to life? But with accountability — holding people accountable to the child, but in the process healing everybody. So, elders are involved as knowledge keepers — our reconnection to traditional teachings, ceremonies, and language. It was stripped away with colonization.

Dhar: In rural parts of Northern India, to cure any problem, mental or financial, people often say, “You have to get everyone together. You have to come back here to the ancestral land with your whole family and village.” That reminds me of reports from the Rwandan genocide when psychologists went in afterward to cure trauma. The people there asked, why would you want to put us in dingy rooms and make us talk about the very worst thing that happened to us? You said we often impose values on indigenous communities. Can you think of an example of this kind of imposition in the way we intervene?

Lacerda-Vandenborn: You’d be hard-pressed to find people who would speak openly about this and say this is why we are removing this particular child. There is always a way of justifying. For example, it’s not uncommon in indigenous communities for families to take care of each other and for the kids to be in the community. Maybe the parent is not in the same room or even in the home, but you always have neighbors and aunties check-in. But if a social worker would arrive at a home and the parent is not present, this is grounds for children being removed because there is no adult supervision.

That is a particular lens of what parenting looks like, that you have to be physically present, but in these smaller communities, there is a different kind of understanding. These values are imposed. If things don’t align with Western values and something happens, then all of that is used against you. We see this in interventions, for example, a social worker walking into a home and looking into the cabinets. If there is no fruit in the cabinet, they say, “you’re unable to provide the needs,” but the mom and dad are also hungry.

Or for example, in indigenous communities, we have a chronic problem of lacking proper housing, overcrowding. This is a treaty responsibility of the federal government, but the government has been failing indigenous communities for decades and has not been honoring treaties for centuries. Yet, the onus is on indigenous peoples to make it work with lack of access to potable water, housing, medical care, unemployment, and school. But if a social worker or a psychologist would walk into a community, the tools that are available to them is to individualize problems. The tools are not sensitive to the context.

Psychology is not a very reflective discipline. Nikolas Rose said in your interview that Psychology has the tendency of saying yes to solving every problem. That’s an issue because we don’t recognize that our mainstream knowledge is oblivious to context.

In the context of indigenous peoples, Psychology is not equipped or willing to admit that colonization continues in many ways — that our children and family are living in poverty, that every aspect of treaty rights are being violated, that we are dealing with the aftermath of assimilationist policy. All we are equipped to do is to describe, diagnose, and intervene with medication.

Dhar: With the African American communities in the US, one of the most commonly overused diagnoses is schizophrenia. Have you seen certain psychological concepts or diagnoses that are overused with indigenous communities?

Lacerda-Vandenborn: Oppositional defiance disorder is commonly used in child welfare, then ADHD and fetal alcohol syndrome disorder are used as a diagnosis, and often a misdiagnosis.

There was this young boy whose story really impacted me in looking at how Psychology is intervening. I met this boy in a brief encounter with a friend. This seven-year-old boy was in his 17th home in the system, and he would arrive in daycare absolutely drugged. My friend said, “There’s nothing I can do. The social worker requires me to give him the medication.” This child was taking five different psychotropic medications to make his behavior manageable and had a host of diagnoses. That was such a shock coming from a collective culture where I understand family and community as having a fundamental role.

I didn’t know about the absolutely devastating statistics of indigenous children in care; this situation was the norm. In Manitoba, 90% of children in care are indigenous. We are removing children from their homes and not taking into account the profound impact of disadvantage. Children bounce from placement to placement, even in the US and other countries.

We keep intervening individually, and there is very little in terms of support. So, diagnosis becomes the intervention, but it does very little to help. That’s the role that universities can play. What is being enacted in legislation is not coming out of the government, it’s coming out of expert knowledge, and we are complicit in this process.

Dhar: There is a global conversation around indigenous communities and the restoration of justice, but the fear is that the political issues might get co-opted by psychological ones. Dian Million, an American studies scholar, writes about people wanting land and water resources while we offer them talk therapy and point to psychological trauma. What have you seen?

Lacerda-Vandenborn: I’m glad that you brought that up because this is a concern for those of us who are not in that position of a particular community; we have the privilege to step in and out of it. It requires us to be in that place of self-analysis constantly. Are we going to keep doing the superficial things, or are we ready to engage in this deep positionality analysis and transformative work of decolonizing ourselves first? It’s a position of continuous epistemic humility. Are we doing our homework and trying to understand the experience of this particular community so that we don’t co-opt things, so we don’t appropriate wisdom or knowledge, or have a partial understanding, where we sanitize things that will fit our way of doing things?

In Canada alone, we have over 600 first nations, but we talk about indigenous peoples as though their values are similar across the board. Same in Brazil. And the position that we should adopt should also be different. Are the folks that actually have the knowledge at decision-making tables? Are they saying what they need? Our job is to listen to engage in decolonization ethically. As Dr. Cindy Blackstock has said, “indigenous children have been overrun by good intentions.”

Dhar: Often, indigenous treatments in mental health are still measured and evaluated using standard methodologies like randomized control trials. What would indigenous research methodology look like? How might they define knowledge and evaluate good treatment?

Lacerda-Vandenborn: In the spirit of not speaking for indigenous people, I’m going to orient our listeners to the profoundly sophisticated body of knowledge that looks at decolonizing research methodology.

One of the things that have remained consistent across many approaches is the honoring of knowledge in relation. It’s understanding that selves are in relation. How can we do research that individualizes, reduces, internalizes, and strips away the relationships? A lot of indigenous research is about that. It’s about understanding how things are happening in relation to one another.

Qualitative approaches and story-work are examples. It’s a mistake to say that indigenous research methodologies do not involve the quantitative, but that follows after we have a very robust understanding of the relationship. Understanding the research and methodology as a reciprocal process where we bring our gifts and the community shares theirs. We don’t just go with the questions; we are part of the community. Once a particular project ends, your ethical connection to that community is not over. You have a commitment.

Dhar: What would it look like if we moved mental health work towards a relational or communal idea of self?

Lacerda-Vandenborn: A young single mom struggled with postpartum depression and having a child, feeling that she had very little support in a condition of poverty, and substance misuse became a problem. Once this mom came into this organization to seek support, the process with a communal understanding of self is that if you’re hurting, we are here for you. It sounds very unscientific, but it’s a wrap-around intervention where this mother is not understood by the difficulties she’s having, but rather the strains she is under in raising a child on her own.

When we move from an individualistic lens to a communal lens, we broaden the horizons of the kinds of services that we can provide. Instead of locating the problem in the person and saying, “This is your inability to cope,” we say, “How can we as a community help to strengthen you in this position.” Instead of diagnosing first, offer support, and if need be, we come to a diagnosis. We shift the dynamic from deficit to strength. It’s connecting with people where they are.

****

MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post How Western Psychology Can Rip Indigenous Families Apart appeared first on Mad In America.

Her interests include understanding different ideas of self, especially in indigenous communities, and how our ignorance about these differences harms people we say we are healing.

Lacerda-Vandenborn notes that “Psychology is not a very reflective discipline.” This is a conversation about lost indigenous children, psychology’s blind spots, and how we can address these concerns with epistemic humility.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: Dr. Vandenborn, welcome. Could you tell us about your work on the decolonization of mental health? How did you become interested in it? Did you find something missing in the way Psychology was being practiced?

Elisa Lacerda-Vandenborn: I would like to start with a territorial acknowledgment of where I am. I am currently in Calgary; the indigenous name is Mohkínstsis. I am working in the traditional territories of the people of Treaty 7 region in Southern Alberta, which includes the Blackfoot Confederacy of the Siksika, Kainai, and Pikani first nations, also the Tsuutʼina first nations and the Stoney Nakoda, which includes the Chiniki, Bearspaw, Chiniki, and Wesley first nations. Mohkínstsis is also the homeland of the Métis Nation of Alberta region three.

Decolonization is a process of correcting the oppressions that have been imposed on indigenous peoples — dismantling the structural, ideological, historical, and cultural beliefs, practices, and values that have cost indigenous lives, wellbeing, resources, culture, land, families, and communities. In terms of mental health, it is about rethinking how our Euro-centric practices have contributed to indigenous peoples’ suffering and continuous colonization.

We can challenge the single view that permeates our practices in mainstream psychology, such as the over-reliance on a biomedical model — defining health and mental health as the absence of illness or disorder. Rather we think of individuals as holistic beings where mental health is only one aspect of emotional, spiritual, and physical health. These are not in isolation, but they are intertwined to a sense of place, to land, to the teachings of the land, to ancestral teachings, and to a sense of the history of that particular community.

About how I got into this. These things have a way of finding us. I became attuned to it after being a newcomer to Canada 18 years ago when I felt that I lost a lot. I remember being in my undergraduate years with 35,000 students and feeling the most alone I could feel. There was a profound sense of loss of community, loss of not being myself through language, and being in the space where I was the odd one out.

When I sought counseling, all of this got located in my inability to cope and low self-esteem. I thought it was quite interesting because I was really mourning the sense of having a big family, my cultural references, ways of being, and it was being located within me. I thought that there was much more to the story that wasn’t making it into the office. I thought there had to be another way of thinking about this, and I’m glad that I resisted that approach and assessment. That misalignment made me research concepts of selfhood.

Dhar: We often portray indigenous communities as deficient and suggest that they do not access mental health services because of stigma, but we don’t look at how the services offered can harm. People can get caught up in the narrative of “it’s a self-esteem problem within me.” You talk about these Euro-American values in Psy-disciplines, and when we export them to non-Euro-American populations, there is this disconnect. Have you seen cases where there was an effort to put these one-size-fits-all services on people?

Lacerda-Vandenborn: Unfortunately, there are plenty of examples of that. For example, the child welfare system has a very individualistic lens. We take these intricate family systems and intervene in a way that really detaches them from themselves and their context.

It’s not uncommon to take families going through complex situations and treat them individually and ignore the larger context. For example, a family experiencing domestic violence — if the mom seeks any support, she is then analyzed as being someone that either has the strength to cope or not. We look at children separately. When families access social services, they are literally placed in different branches. We often end up with children in care. Psychology is intertwined in this process because the intake, the assessments of the mental health of children and of the mom, are provided from a psychological apparatus.

We treat individuals separately and create this big problem where children are placed in care, and the chances of mom actually getting children back, drop by 85%. So, you instantly create more harm when you don’t look at families as systems and their context such as poverty, lack of access, social support, afterschool care. We take something with so many social references and simply attribute the problem to the coping mechanisms of the mom. We are intervening and separating mom from a child over the perceived notion of risk attributed from a Euro-centric perspective.

Dhar: A big relational and systemic problem is reduced to “the mother is narcissistic” or “co-dependent” — these psychological terms that individualize problems?

Lacerda-Vandenborn: Codependency is used a lot, and major depression, or a mother being too anxious or that the child’s socio-emotional needs are not being met. These things serve as a justification for cases where the custody can be removed, but little attention is paid to the fact that mom is deeply in need of support. Our system has this built-in adversarial approach, particularly in family relations where we need someone who stands as the perpetrator and someone as the victim. There is very little room for the family’s needs in the context of the community.

Dhar: If you had to pick one thing that the current mainstream mental health system completely ignores or lacks, what would it be?

Lacerda-Vandenborn: Folks are very comfortable continuing their practices as they have been, even though there is a sense that those looking for mental health support are not getting everything they need. People may feel hopeless about “what I can offer it’s not enough.” There is a sense of exhaustion about engaging in deep work to find where our approach, assumptions, and concepts are coming from. Do you think you really addressed the needs of those who are non-white, from lower socio-economic status? We are still quite comfortable refraining from problematizing where we stand, even though we know it’s not quite working out.

We may lack the entry points for this discussion. Universities have a very large role to play here because I believe it’s lacking in our educational system. I was lucky enough to be in theoretical psychology, questioning how we conceptualize things. What are the tools, where did those tools come from? What are the ethics of these approaches? We fast forward to diagnosis, assessment, naming. What’s missing is the relational piece.

That’s where social justice really comes in because we need to attend to our positionality and our intersectionality every time we enter a particular office. We like to think we are all humans, and that’s one aspect of it, but there is power; the analysis of that power is missing.

We keep spinning our wheels because we’re desperately trying to change the practical end of things, but if we don’t revisit our philosophical traditions and theoretical assumptions, it will be an exercise of frustration. That’s why those on the frontline feel the exhaustion because they see practice being changed over and over.

Dhar: The cultural competence idea can be a Band-Aid solution. You have done your research with community-led family group conferencing. Could you say more about this?

Lacerda-Vandenborn: Family Group Conferencing (FGC) is an approach that came from the Māori in New Zealand. This is an intervention with a much larger understanding of family, the concept of whānau. We understand that our uncles, aunties, and grandparents are part of the clan. They have a role and a responsibility in childbirth, child development, and rearing. Everybody has a responsibility to this child. I paid attention to its use in child welfare with an organization in Winnipeg, Manitoba, called Ma Mawi Wi Chi Itata. This is a grandmother organization that has been working with FGC since 2000.

In this program, once a child has been flagged in the child welfare systems, where a family is identified as at risk, instead of blaming mom and dad for their difficulties, the practice is to bring everybody important in that child’s life together. With indigenous communities, the main category of involvement in child welfare is neglect, which is intimately connected with poverty. So, we bring all of the important people in this child’s life and ask, “What is the support that you need to be the best parent that you can be? How can we be a support?” Because we all have a responsibility to this child and family, we are all part of this.

In the mainstream system, families are seen as the focus of deficit. In this program, you give agency back to the family to say, “You will create the plan. These are some of the concerns, but it’s up to you to create a plan that is sustainable, that addresses your needs.” These are relational needs, mental health needs, housing needs, employment needs, support with nutrition, etc. We say, “if these are your needs, this is what we can offer.”

Instead of a family going from place to place to find the services they need, everybody is in the room, and everybody commits to the well-being of this child. In this program, unlike the national average in Canada’s child welfare assistance, where the reunification rate is 15%, this program unifies 80% of the families without reentries into the system. We put the well-being of the families on the families; they are the experts of their lives, their relationships — they know their needs. So, instead of the child welfare system imposing rules that ignore the context of the family, we listen and then we intervene.

The mentors are actually part of the community, so they’re not psychologists. They have experience of what it feels like to be in a place where discrimination is part of your daily life. People lack support and often move away from their communities to access services in a bigger center such as Winnipeg. When they do, they lose a lot of their community and support.

So, it’s about placing agency and loving, and I know this is a very unpopular word in psychology, but how do you love families back to life? But with accountability — holding people accountable to the child, but in the process healing everybody. So, elders are involved as knowledge keepers — our reconnection to traditional teachings, ceremonies, and language. It was stripped away with colonization.

Dhar: In rural parts of Northern India, to cure any problem, mental or financial, people often say, “You have to get everyone together. You have to come back here to the ancestral land with your whole family and village.” That reminds me of reports from the Rwandan genocide when psychologists went in afterward to cure trauma. The people there asked, why would you want to put us in dingy rooms and make us talk about the very worst thing that happened to us? You said we often impose values on indigenous communities. Can you think of an example of this kind of imposition in the way we intervene?

Lacerda-Vandenborn: You’d be hard-pressed to find people who would speak openly about this and say this is why we are removing this particular child. There is always a way of justifying. For example, it’s not uncommon in indigenous communities for families to take care of each other and for the kids to be in the community. Maybe the parent is not in the same room or even in the home, but you always have neighbors and aunties check-in. But if a social worker would arrive at a home and the parent is not present, this is grounds for children being removed because there is no adult supervision.

That is a particular lens of what parenting looks like, that you have to be physically present, but in these smaller communities, there is a different kind of understanding. These values are imposed. If things don’t align with Western values and something happens, then all of that is used against you. We see this in interventions, for example, a social worker walking into a home and looking into the cabinets. If there is no fruit in the cabinet, they say, “you’re unable to provide the needs,” but the mom and dad are also hungry.

Or for example, in indigenous communities, we have a chronic problem of lacking proper housing, overcrowding. This is a treaty responsibility of the federal government, but the government has been failing indigenous communities for decades and has not been honoring treaties for centuries. Yet, the onus is on indigenous peoples to make it work with lack of access to potable water, housing, medical care, unemployment, and school. But if a social worker or a psychologist would walk into a community, the tools that are available to them is to individualize problems. The tools are not sensitive to the context.

Psychology is not a very reflective discipline. Nikolas Rose said in your interview that Psychology has the tendency of saying yes to solving every problem. That’s an issue because we don’t recognize that our mainstream knowledge is oblivious to context.

In the context of indigenous peoples, Psychology is not equipped or willing to admit that colonization continues in many ways — that our children and family are living in poverty, that every aspect of treaty rights are being violated, that we are dealing with the aftermath of assimilationist policy. All we are equipped to do is to describe, diagnose, and intervene with medication.

Dhar: With the African American communities in the US, one of the most commonly overused diagnoses is schizophrenia. Have you seen certain psychological concepts or diagnoses that are overused with indigenous communities?

Lacerda-Vandenborn: Oppositional defiance disorder is commonly used in child welfare, then ADHD and fetal alcohol syndrome disorder are used as a diagnosis, and often a misdiagnosis.

There was this young boy whose story really impacted me in looking at how Psychology is intervening. I met this boy in a brief encounter with a friend. This seven-year-old boy was in his 17th home in the system, and he would arrive in daycare absolutely drugged. My friend said, “There’s nothing I can do. The social worker requires me to give him the medication.” This child was taking five different psychotropic medications to make his behavior manageable and had a host of diagnoses. That was such a shock coming from a collective culture where I understand family and community as having a fundamental role.

I didn’t know about the absolutely devastating statistics of indigenous children in care; this situation was the norm. In Manitoba, 90% of children in care are indigenous. We are removing children from their homes and not taking into account the profound impact of disadvantage. Children bounce from placement to placement, even in the US and other countries.

We keep intervening individually, and there is very little in terms of support. So, diagnosis becomes the intervention, but it does very little to help. That’s the role that universities can play. What is being enacted in legislation is not coming out of the government, it’s coming out of expert knowledge, and we are complicit in this process.

Dhar: There is a global conversation around indigenous communities and the restoration of justice, but the fear is that the political issues might get co-opted by psychological ones. Dian Million, an American studies scholar, writes about people wanting land and water resources while we offer them talk therapy and point to psychological trauma. What have you seen?

Lacerda-Vandenborn: I’m glad that you brought that up because this is a concern for those of us who are not in that position of a particular community; we have the privilege to step in and out of it. It requires us to be in that place of self-analysis constantly. Are we going to keep doing the superficial things, or are we ready to engage in this deep positionality analysis and transformative work of decolonizing ourselves first? It’s a position of continuous epistemic humility. Are we doing our homework and trying to understand the experience of this particular community so that we don’t co-opt things, so we don’t appropriate wisdom or knowledge, or have a partial understanding, where we sanitize things that will fit our way of doing things?

In Canada alone, we have over 600 first nations, but we talk about indigenous peoples as though their values are similar across the board. Same in Brazil. And the position that we should adopt should also be different. Are the folks that actually have the knowledge at decision-making tables? Are they saying what they need? Our job is to listen to engage in decolonization ethically. As Dr. Cindy Blackstock has said, “indigenous children have been overrun by good intentions.”

Dhar: Often, indigenous treatments in mental health are still measured and evaluated using standard methodologies like randomized control trials. What would indigenous research methodology look like? How might they define knowledge and evaluate good treatment?

Lacerda-Vandenborn: In the spirit of not speaking for indigenous people, I’m going to orient our listeners to the profoundly sophisticated body of knowledge that looks at decolonizing research methodology.

One of the things that have remained consistent across many approaches is the honoring of knowledge in relation. It’s understanding that selves are in relation. How can we do research that individualizes, reduces, internalizes, and strips away the relationships? A lot of indigenous research is about that. It’s about understanding how things are happening in relation to one another.

Qualitative approaches and story-work are examples. It’s a mistake to say that indigenous research methodologies do not involve the quantitative, but that follows after we have a very robust understanding of the relationship. Understanding the research and methodology as a reciprocal process where we bring our gifts and the community shares theirs. We don’t just go with the questions; we are part of the community. Once a particular project ends, your ethical connection to that community is not over. You have a commitment.

Dhar: What would it look like if we moved mental health work towards a relational or communal idea of self?

Lacerda-Vandenborn: A young single mom struggled with postpartum depression and having a child, feeling that she had very little support in a condition of poverty, and substance misuse became a problem. Once this mom came into this organization to seek support, the process with a communal understanding of self is that if you’re hurting, we are here for you. It sounds very unscientific, but it’s a wrap-around intervention where this mother is not understood by the difficulties she’s having, but rather the strains she is under in raising a child on her own.

When we move from an individualistic lens to a communal lens, we broaden the horizons of the kinds of services that we can provide. Instead of locating the problem in the person and saying, “This is your inability to cope,” we say, “How can we as a community help to strengthen you in this position.” Instead of diagnosing first, offer support, and if need be, we come to a diagnosis. We shift the dynamic from deficit to strength. It’s connecting with people where they are.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post How Western Psychology Can Rip Indigenous Families Apart: An Interview with Elisa Lacerda-Vandenborn appeared first on Mad In America.

Dr. Ungar’s work is globally recognized and centers on community trauma and community resilience. In particular, his work explores resilience among marginalized children and families, especially those involved with child welfare and mental health services, refugees, and immigrant youth.

His research is spread across continents and challenges our traditional notions of trauma and resilience. Analyzing people’s risks and available resources, he scrutinizes simplistic ideas of individual perseverance and grit in the face of trauma. Instead, he implicates the role of context, circumstances, and ill-suited services in contributing to people’s psychological suffering.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: The dominant view of resilience is that it’s similar to grit and perseverance—something inside people, but you write about socio-ecological resilience. What is that?

Michael Ungar: Thinking about resilience, people often refer to individual qualities and miss that those qualities are activated or facilitated by the environments around us.

For example, after a major natural disaster like a huge wildfire in Northern Alberta in Canada, 85,000 people were evacuated, and 2,500 structures burned to the ground. Massive numbers of people were displaced to shelters. As we were trying to address the potential for trauma after a major disruption, the banks and the insurance companies had learned from past events. They took their bankers and insurance adjusters in buses to the shelters. They made sure the people got access to their banking information and accounts. They immediately started the process of getting insurance claims going, and people were rebuilding their community within six months.

Contrast that to Hurricane Katrina or other major disasters. When we talk about preventing mental health crises following a significant disaster, do you send in the psychologists or the insurance adjusters as your first line of intervention? From a resilience point of view, you send insurance adjusters because they create the right conditions.

To make people more optimistic about the future, you don’t simply send them in front of a mirror and say, “think positive thoughts.” Our resilience is tied up in whether or not that desire to be positive meets an environment that makes it possible for us to experience success.

Dhar: As people begin to rebuild, they enter the same communities they were a part of and return to the people they had connections with.

Ungar: That’s the social and ecological interpretation of resilience—a domino effect, like with insurance adjusters. No one factor works for everybody in different contexts.

For example, we know that people heal from trauma better by being back in stable relationships. It creates a sense of routine or predictability in life, inspiring optimism, and those people show less depression and anxiety. They also tend to have larger social networks.

If we can create environments rich in opportunities to bring out people’s best selves, then it’s a cascade of interactions. Almost everyone who is seriously studying resilience has moved away from just this idea of individual grit or mindfulness. Those are positive and helpful, but to help people respond to risk and stress, we need to think about the context in which they are adapting.

Dhar: Why do you think traditionally, in our larger culture but especially in the psy-disciplines and positive psychology, so much of our focus has been on the individual regarding resilience?

Ungar: Some of the positive psychologists, even Martin Seligman later, began to acknowledge that to flourish required communities, contexts, good government, and other systems.

If we want a mindful society, it’s about also creating mindfulness in our politicians and government structures. So there’s a drift towards acknowledging that. But on Oprah, they still talk about resilience as one’s individual story because it’s literally in the water of Western society’s discourse to think about rugged individualism, autonomy, independence—the idea that individual grit could produce positive outcomes.

Instead, I see that as risk on one side increases, such as dangers we face and our mental health challenges, the more resources we need to cope. We want to think about our own individual capacities to overcome when in fact, we are stronger together; that’s what the science of resilience teaches us, that we need to pay attention to cultural and other external factors that are beyond us.

Dhar: This reminds me of trauma theory in its current form. It has become reductionistic—this idea that every problem can always be traced to trauma or that traumatic events always lead to long-term pathology. What have you seen? Do horrible, awful, traumatic events always automatically lead to pathology, or are there protective factors or contexts that matter?

Ungar: As a field, we’re going in the opposite direction from the notion that a single factor like trauma, or a particular protective factor, can predict a particular outcome.

One group argues that resilience is about how we attribute our experience (do we blame ourselves, others?)—how our brains filter our external experience. But that is only one of the mechanisms. For example, I can take a child who doesn’t believe that the future is optimistic, and I can create a facilitative environment in their classroom, give them hope for learning, a positive mentor, economic support. I can do all those things and shift their attribution of whether they think they have hope.

We’re coming around to this notion that trauma can’t be explained by any single mechanism. On the resilience side, we understand systems are tied together. Let me ballpark this. If you look at any traumatized population, about 70% show an ability to bounce back. That bouncing back occurs because people have access to extended kinship networks, jobs, housing, stable governments, food, a faith community. So, when people go through their homes burning down, or a tsunami, or sexual violence, those things are there for support.

That leaves about 30% needing extra help. If you look at the outcomes of really any psychotherapy, it’s about 60 to 70% effective, or 50%—So of 30% of the sample that needs extra help, maybe two-thirds of them respond to a good intervention. That leaves 10% of people who are probably going to struggle. The good news is that time heals. Looking at large longitudinal studies of people who had a really bad start in life, you find that people find the connections they need over time.

Sampson and Laub did a study in which they looked at a sample of delinquent boys beginning in the 1930s, and they traced 500 of them into the 70s. Many of these youngsters eventually found military service, whether we agree with that or not, as a way of grounding them, creating a routine, a sense of contribution to their societies. They also found stable relationships. The end result was that over time, even 10% of people who didn’t respond to therapeutic intervention ended up finding the resources they needed to cope with life to survive, even thrive.

Dhar: This reminds me of Sebastian Junger’s work. He’s a war journalist and has written about American soldiers missing war because they found a certain sense of routine and community there. So often, problems begin after returning to an alienating life where nobody understands you.

Ungar: I could give you a parallel example of that, which is refugees.

We have this assumption that the trauma that refugees experience is all about whatever horrific event caused them to flee. Let’s not underestimate the impact of that, but in the long term, especially for children, the camp experience is often one of stability. If you’re a five-year-old and your parents are telling you to go to bed, whether you’re in a tent in a refugee camp (please don’t think I am making light of this), the child’s perception of that experience can be of stability as they are going to a school.

It’s the resettlement process, often for teenagers, that’s extremely traumatizing. Imagine you’re a 16-year-old, and suddenly you’re in a land where you don’t speak the language. You are ostracized, marginalized because of your race, and are suddenly academically incompetent because you’re in a new place with a new language. You have no prospects for the future; it’s all those conditions that create the trauma.

Switching to resilience, the systems that have to be in place to resolve these problems have to be as complex as the problems that are causing them. For that refugee child, you have to see: do they have access to their school records to create continuity in their learning, do they have access to language classes or are they racially marginalized in their new host community?

I’ll give you a small example of hope. Right after the Syrian crisis, we brought into Canada 43,000 Syrian refugees. About 55% of them were children. There was a school board in one community that wanted to ease their transition. So they taught the host children in the elementary school a few words in Arabic and filmed them saying to the Syrian children who were coming to their school “welcome,” “my name is__,” and “this is my teacher.” They created a context that was familiar and accommodating to the child that was coming in.

Initiatives like that in conjunction with safe school policies, trauma-informed therapies for those struggling—you have to get all the constellation of systems working—then you can give a child that sense of wonder, connection, acceptance.

Dhar: Just from a personal example, I can corroborate that. My family and community from Kashmiris became refugees, but we migrated to places where we spoke the language, looked similar to hosts, had immense caste privilege, national sympathy, and reservations (called affirmative action in the US). In a generation or two, we have thrived, not all but most. People who didn’t get these are still struggling.

Ungar: It is exactly that story that I hear in variations, like the Irish diaspora in New York City that allowed immigrants from Ireland to settle quite quickly by having an economic foothold.

It is about creating conditions for coping, resilience, and flourishing like economic networks and even a faith community. We get focused on the idea of a belief in God as the resilience factor, but people who are a part of spiritual or faith communities have access to an amazing number of social supports, instrumental supports, economic supports. They have communities that will frequent their businesses. They can find a plumber, get information on mortgage rates. Those things create a sense of wellbeing, belonging, attachment, and empathy from others. One feels hopeful for the future. It gives you a sense of opportunity.

Dhar: How did you reach the socio-ecological understanding of resilience? Was it a personal journey, or is it because social work is far more conducive to this than psychology?

Ungar: I chose social work, and I’ve worked with community psychologists and community psychiatrists. There’s a certain grit to the work in terms of actual contact with communities. People engage, and you’re not just in an office; you see people’s lives as they are lived, which opens up a certain appreciation.

For example, I did a lot of early work through clubhouse models about getting people with chronic mental illnesses to have housing, a place to go, and a meaningful opportunity to contribute to their communities—very empowering models.

That led me into a conversation around resilience, but it always seemed to be contextual factors. I remember working with one girl very early in my career, and I was trying to find out why she was doing better than expected. She was out of a horrific past but was going to school, not doing drugs. I put it all on her shoulders—”Oh, you’re so strong! You’re so amazing!” She looked at me like, “You don’t get it. I also had a good teacher who really inspired me or somebody helped me.” She was decades ahead of me, and I would eventually catch up to her. Then I began to look for those patterns instead of looking just for the individual qualities.

I began to ask questions about the processes of engagement with resources and systems around, and that’s led me here. For example, I love working with architects; super architecture buildings actively trigger wellbeing through their use of light, space, shape, and design.

If you think about that with social service networks, you see patterns. In our indigenous communities in the United States, Canada, and Australia, rates of suicide are so high after the cultural genocide perpetrated against them by the residential school systems. But when you start talking about resilience, an interesting fact is that not every indigenous community has youth suicide problems.

The work of Christopher Lalonde and Michael Chandler found that in communities where suicide rates were very low, women were more likely to be involved in the governance of the community. They found that there was a volunteer fire department that reflects cohesion in the community. They found that the community was actively involved in land claim settlements or that there was a cultural space dedicated to the cultural celebration, not a converted school gym, but an actual dedicated space.

When you begin to think about all those factors, you begin to move away from just pathologizing a group of people and away from this essentializing conversation that “you’re a refugee, you must be traumatized.” We move instead to better and more nuanced assessments of risk factors. When you understand a person’s risk and resources, you get to understand which protective factors will have the most poignancy in an individual’s life.

Dhar: You have written that if the resources we provide to people are not culturally relevant, they could be useless. We have talked about the Global North, but how do some other cultures think about resilience? Could you give an example?

Ungar: We were doing research in 11 countries, five continents—the United States, Canada, China, Hong Kong, China, Thailand, India, and others. We were trying to understand the resilience of young people in challenging contexts but who were doing well.

When we began to ask people in Gambia what was a measure of a resilient child, they said a resilient child grows up and understands that their economic wellbeing, education, and everything else is very important to their parents’ long long-term retirement. I came back to Canada, and I have five children and told them that a resilient child looks after their parents when they retire. My daughter looked at me with the blank stare of “You’ve got to be kidding” because culturally, my children have no expectations. Let me situate myself—I am Caucasian, upper-middle-class, living in a democracy, able-bodied, heterosexual. I do not expect my children to support me. I hope they visit me! But in other contexts and cultures, the measure of a resilient child is a measure of whether that child is a contributing member of the society and specifically to their kinship network.

We worked in Tanzania with young teen mothers. Their resilience was tied up to not only a positive attitude and motivation but also whether or not they had access to a microcredit scheme, which offers a 100 to 300 US dollar grant. Young women often used those grants to set up small stalls in the marketplace to sell vegetables or some other goods. In the same study, when we were working with teenage moms in Winnipeg, in central Canada, their success, resilience, and ability to cope was tied up with whether the school had a daycare. So, microcredit, employment, or entrepreneurship in Tanzania versus an educational pathway in Canada.

Another young woman said that she was doing well because her teacher had bought her a sled to take her child to school. If you’re living in an extremely rough situation with your child, even that $50 sled is going to make a potential difference. And our resilience is partly about our ability to navigate, negotiate, or get the resources we need to be given to us in ways that make sense to us.

Dhar: Sometimes, services we have for children are just ineffective. In the past, there has been a tendency to blame it on the personality of the child—no “openness to experience” or empathy, etc. What have you found? When children don’t respond well to services, what is usually happening?

Ungar: There is a mismatch.

Two children from the same family, one turns out stellar, and the other is on drugs. It’s a bit of a combination of personalities and environment. Imagine an outgoing, gregarious child growing up in a family that is constantly outdoors, and that child just fits. You put that same rambunctious child into a high-rise apartment in a very studious family, and that child constantly feels out of place. Their energy basically feeds them into a diagnosis of ADHD. A child with a certain kind of personality or talents that are somewhat genetically predisposed still has to meet an environment that acknowledges that.

It’s like a game of mirrors where you both put your hands up and work palm to palm; one leads, and the other follows. What often happens with children is that we offer them whatever we have available instead of what they actually need.

I recently worked with a young fellow the courts referred to me because he got in trouble. He was fighting a lot because he was racially disrespected, called names. Now I can do anger management training, but it was ethically wrong just to tell him to take three deep breaths and self-regulate. The solution was to go and get angry but to channel that anger by learning from his community. So, we brought in his uncle and others in his community who have had to deal with racism. We strategized for self and group advocacy. He eventually found a larger peer group to have others protect him from those kinds of racial slurs. The pathway was highly contextual and involved not only changes in cognitions and beliefs but also changes in structures around him.

You negotiate; sometimes, I lead as the therapist into new territory by helping people find new identities and ways of coping, but sometimes I listen to what the child and the family say; what fits best for you in your particular world? What is meaningful to you?

Dhar: Some of the big problems in the psy-disciplines when it comes to working with children are overdiagnosis and over-drugging. You are a family therapist and a social worker. What are the mistakes you have seen us make, especially when working with children who have been in highly challenging situations?

Ungar: I think the biggest error we make is that we don’t assess the risk exposure prior to the intervention. I can’t change genes, but I can change interventions to tailor them to a particular risk profile.

For instance, I was in a supervisory role with a wonderful psychologist who had a young fellow who’d been sexually victimized by his father when he was about three. The mom was the primary breadwinner and was outside the home. Eventually, though, this primary caregiver to the child (the father) goes to jail, and the trauma-informed play therapy begins. The psychologist was really struggling to get him to talk about the trauma of the sexual victimization.

I said to her, “what is the trauma” and she was leaning towards the sexual abuse. I said when that child is 8, maybe 10, the embodied memories of that sexual victimization will come back. But at age 5, the trauma that the child experienced is the loss of the primary caregiver. His father left him to go to jail. Mom was not functioning well, but this boy had found a caring adult (therapist) who focused on him. The intervention wasn’t actually about the trauma but about healing the fracture of the attachments. Then the psychologist was slower in moving towards the trauma conversations about the sexual victimization.

This works in the smallest ways. I work with homeless youth—should we talk about stabilizing their housing or about some cognitive therapy? We need to follow our clients’ leads and do things that they need to do first.

We’ve come up with a program called R2 which refers to rugged qualities and resources, but it’s really about matching people’s risk profiles. Think about a homeless child versus a child who has stability, and both have a learning challenge—very different risk profiles. Therefore, you are going to address the first child’s issues with “I have a great family, great school, all the resources, but I just don’t believe in myself.” That’s a cognitively rugged quality to work on. But in a child who is precariously housed whose parents are struggling with addiction issues, you can’t just say, “Hey, here’s a can-do attitude! Get over it.” I must think about the whole context, maybe find them a mentor and a supportive place to do their homework. Those things are going to be the catalyst first before the psychological intervention.

Dhar: So, it’s inadvisable to pre-decide what is a positive outcome and what is a protective factor. You’ve edited a book about multisystemic resilience and talked about the importance of conversation between disciplines. What is this idea, and how do you think different disciplines can contribute?

Ungar: We’re doing this big study on communities that depend on the oil and gas industry as we decarbonize our economy. They are going to have to cope with massive disruptions.

They are teaching us a lot about multisystemic resilience. Every time the world oil price dips or goes up, it changes the dynamics inside families, like whether one of your parents will work in another community, whether you will have money to join the little league, is your housing going to be substandard? We understand that everything, like green spaces in a community, affects a child’s decisions. In other countries, too, we now understand that a child will literally decide on their career paths based on the world price of oil—it has a cascade effect.

When we take away those jobs and diversify economies, that will also have a tectonic shift in the wellbeing of those families. In the multisystemic idea, resilience is thought of as human interactions with the networks around us. For instance, if you want to stop poaching to protect a fragile ecological system, you don’t just put up a fence. You have to address the economic incentives for the communities nearby to stop poaching.

Different aspects of our lives, from our buildings and the natural environments, influence how we think and feel. We know that our gut bacteria influence our immune systems, which then help us better withstand stress. But what’s in our gut is a function of whether our environments are rich in healthy bacteria, which depends on whether we live in a food desert. In our food wastelands, people cannot access good food because transportation systems are inadequate or because their jobs don’t pay enough to buy healthy food, changing their microbiome and having a cascade effect on their psychological systems.

Our mental health is tied into it. It works the other way around too. What’s actually happening in Alberta is movements towards greening energy; they’re redefining their identity from “we are oil and gas workers” to “we are now energy workers.” If you’re an energy worker and your identity shifts to that, there’s much more economic opportunity.

Identity is a psychological concept, so if you hang on dearly to a particular identity and don’t show flexibility and adaptability in your thinking, then you’re not going to take advantage of the new wave of green opportunities that could save your community, your family, and your psychological wellbeing.

Our resilience is tied up in multiple systems, not just our individual thoughts and feelings, but it’s always connected to what happens around us as well. The best part is that the solutions are not just for all individuals to change, but we can affect change in many systems and have a cascade effect. So I’m an optimist because I think it opens up possibilities.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations

The post Looking Beyond Self-Help to Understand Resilience: An Interview with Michael Ungar appeared first on Mad In America.

Antidepressant withdrawal, which had long been denied and ignored by the psychiatric community, is at the forefront of the conversation now. Numerous official medical bodies and even prominent psychiatrists have pointed to the adverse and long-lasting effects that can occur when discontinuing antidepressants.

This has exposed biased methodologies behind much of the extant antidepressant research, with drug companies often actively suppressing placebo response rates. It has also raised serious doubts about the chemical imbalance hypothesis, so much so that many psychiatrists are now beginning to divorce themselves from it. Service user movements and voices are responsible for drawing attention to this issue and demanding changes. This article adds to those concerns by undertaking an academic analysis through a first-person narrative.

Lewis writes that while in 1996 there was already some research around withdrawal effects of antidepressants, campaigns such as Defeat Depression had successfully managed to portray it as a chemical imbalance problem. As a result, antidepressants were claimed to be safe, effective, and non-habit-forming.

She then notes that today her experience of repeatedly trying to get off antidepressants and being hounded by severe withdrawal symptoms is neither uncommon nor unknown. Moreover, the hypothesis that antidepressants can cause structural and chemical changes in the brain and result in drug dependence is gaining widespread acceptance. For example, The Royal College of Psychiatry recently released a statement about their severe and long-lasting dependence.

Lewis provides an overview of four important studies that are essential reading for general practitioners who want to update and inform themselves of recent findings on antidepressant withdrawal. There are many reasons antidepressants are overprescribed: industry corruption, biased methodology, overprescription by general practitioners, etc. Lewis’ suggestions to general practitioners are thus of particular importance here.

The first paper is a 2019 systematic literature review by Davies and Read, which identified and analyzed 24 studies. It found that:

Lewis writes that the NIMH has for decades underplayed how common antidepressant withdrawal is but recently has admitted to its severity and long-lasting nature.

The second important piece of literature is a 2020 paper by Guy, Brown, Lewis, and Horowitz that details the first-person service user experience of mistaking psychotropic drug withdrawal for relapse. In other words, what is actually withdrawal from drugs is wrongly assumed to be the patient relapsing into the original underlying condition (such as depression) or the emergence of a new one.

The experience of 158 responders was analyzed for themes, which were used for petitions forwarded to the Scottish and Welsh parliaments. The authors found 8 separate points where doctors mistook psychotropic drug withdrawal for something else; they also lacked knowledge on tapering techniques. In addition, patients were often given inadequate information about withdrawal risks.

The next paper summarized by Lewis is a 2019 article by Horowitz and Taylor concerning ways to taper off antidepressants. Lewis considers this to be the most important article, given that if her prescribers knew about it, it might have eased her own ordeal.

Using PET scans, the authors conclude that tapering should be slow and hyperbolic (smaller and smaller reduction each time) to doses that are vastly smaller than what is considered minimal dosage. This is essential to reducing withdrawal effects. This article helps differentiate between withdrawal (which occurs in days, responds to antidepressants, and can physiologically and psychologically appear different from original symptoms) and relapse. Despite these differences, sometimes the original symptoms and withdrawal can look the same, complicating matters further.

Given the dearth of systemic services that help people withdraw from psychotropics or even provide relevant and updated information, the service-user movement has filled in the void. Social media support groups are an integral part of this. Thus, the last paper suggested by Lewis is a 2021 study by Framer on Facebook support groups for antidepressant withdrawal.

Framer is a service user and struggled with antidepressant withdrawal; she is also the founder of survivingantidepressants.org. This paper points to how service users have supported each other and helped to taper from antidepressants – especially in the absence of psychiatric help. She writes:

Her work has brought together numerous concerns around antidepressant withdrawal – how to taper, protracted withdrawal, identifying drug reactions, coping methods, etc.

Lewis’ article is another step in making prescribers more aware of the adverse effects of commonly prescribed psychotropics.

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Lewis, S. (2021). The four research papers I wish my doctor had read before prescribing an antidepressant. British Journal of Medical Practice. DOI: https://doi.org/10.3399/bjgp21X716321 (Link)

The post Four Essential Studies on Antidepressant Withdrawal Every Prescriber Must Read appeared first on Mad In America.

Antipsychotic medication is the first line of treatment in the US and the UK. Criticisms have followed it through history and, more recently, become louder. Recent research has shown that people who stop taking antipsychotics tend to fare better in the long run and are more likely to recover. Others have focused on the numerous adverse effects of the drugs, especially their long-term effects. Most disturbingly, they have been associated with brain atrophy in children and causing decreased cortical thickness in adults.

Other criticisms have come from research on people’s experience with antipsychotics. Patients describe some benefits but also a reduced sense of self and agency. The biggest survey to date noted that most patients reported negative consequences of being on these drugs. Resultantly, there has been a push to develop guidelines on withdrawing safely from psychiatric drugs, as withdrawal effects from antipsychotic medications can be debilitating.

Cooper and her colleagues begin by citing the 1979 WHO findings that, when it came to psychosis, people in poorer countries with less access to medication did better than those in rich nations. While antipsychotics help reduce symptoms for some patients, they can be ineffective in others and have significant adverse effects. New research suggests that for every 6 people treated with antipsychotics, 1 person has improved beneficial outcomes.

There are also numerous reasons patients stop taking antipsychotics. The adverse effects can include “significant weight gain, diabetes, heart disease, movement disorders and structural changes in the brain including brain volume reduction… sedation, lethargy, emotional flattening and sexual dysfunction which can adversely impact on quality of life”.

Patients can be coerced into treatment which can impede the relationship between them and the mental health system, closing down opportunities for psychological treatments. The authors write that the UK’s NICE (National Institute for Health and Care Excellence) guidelines support shared-decision making between mental health workers and patients. As most patients retain their decision-making capacity, they have the right to choose alternative treatments if they desire. The authors write:

The authors also note that antipsychotics became popular because they were thought to reduce relapse. Studies have also shown that stopping antipsychotics suddenly can lead to florid psychosis. However, while this was earlier confused with relapse, it is now hypothesized as a result of drug withdrawal caused by dopamine supersensitivity.

Thus, many patients want to get off their medications but have little guidance or help. Given the absence of national guidelines and pressure on mental health workers to discharge people, practitioners are often unsure about alternate interventions.

Under the pressure of service users who have developed their own resources to come off psychiatric drugs such as “The Harm Reduction Guide To Coming Off Drugs” and “The Inner Compass Initiative,” NICE has asked for further research into psychosocial interventions. More recently, the Royal College of Psychiatry also published a set of resources and guidelines to withdraw from antidepressants, signaling building support for the deprescribing movement.

The authors explore the literature around minimal medication approaches to psychosis across the world. Historically there have been numerous places where minimal medication approaches and psychosocial treatments have been attempted – Soteria House in the US and Switzerland, Kingsley Hall and Villa 21 in the UK, and currently Open Dialogue in Finland (earlier need-adapted treatment).

These places have either not used antipsychotics, or minimized their use (delaying them by 6 weeks), or used benzodiazepines for a short period instead. They focus on providing emotional and practical support and sometimes on the process and experience of psychosis.

Cooper and her colleagues write that there are two major systematic reviews of these approaches, first by Calton and colleagues in 2008 and another by Cooper and Laxhman in 2020. Reviewing 9 psychosocial treatments in 2,250 patients, the analysis found that most treatments, when compared to the antipsychotic-using control group, were at least as effective as the control group – both in symptom reduction and improving functioning. This was achieved via far less antipsychotic use and with no evidence of any greater harm in the minimally medicated patients. However, there are many limitations with these promising studies, such as the absence of high-quality research, small samples, and the exclusion of high-risk patients.

Recently an Australian trial compared, among first-episode psychosis patients, an antipsychotic group with another group that received intensive psychosocial treatment (care-coordination, CBT, psychoeducation, family intervention, and close monitoring). After 6 months, and then 1 and 2 years, no difference was found between groups. Drop-out rates were high in both groups. Cooper and colleagues write:

Currently, in Vermont and parts of Norway, institutions have established minimal medication approaches under pressure from service users. Formal evaluation of these initiatives has not yet been published.

The authors note that there are several approaches to alternatives to medication (or with minimal medication) that can be offered to patients who prefer them.

First, different types of psychosocial interventions can be used, such as “emotional and practical support, talking therapies and psychoeducation… ‘being with’ people who are actively psychotic, in a non-intrusive manner, practical, social, and creative activities such as exercise, art’ and animal therapy, and peer support from people with lived experience.”

Second, alternatives like The Hearing Voices Movement allow people to see their voices as meaningful and help incorporate them into their life experience by working with the voices.

Third, building a better relationship with family members and friends who are often concerned about relapse is important; this involves including them in appointments and giving them good information. They can provide essential support, and if not, then places like Soteria provide relief from difficult familial circumstances. Short-term use of benzodiazepines (less than 1 month because of their addictive properties) can alleviate some anxiety.

Lastly, plans to manage deterioration and relapse should be made in collaboration with other services. A strong plan on how to deprescribe and get off antipsychotics is important. Research has shown that a very slow taper is most effective in reducing withdrawal effects. Tapering strips are also of use. This is the period when people might need extra support and close monitoring.

Some might benefit from completely stopping the use of the drugs, while others from maintaining minimal dosage. Good information on withdrawal symptoms and recognizing and dealing with them must be given to patients and their families.

The authors conclude by noting:

****

Cooper, R.E., Mason, J.P., Calton, T., Richardson, J. & Joanna Moncrieff (2021) Opinion Piece: The case for establishing a minimal medication alternative for psychosis and schizophrenia, Psychosis, DOI: 10.1080/17522439.2021.1930119 (Link)

The post Minimal Medication Alternatives for Psychosis Needed appeared first on Mad In America.

Her expertise is deep and spread across a wide variety of disciplines. As an analytic philosopher, she specializes in philosophy of mind, philosophy of psychiatry, moral psychology, and clinical ethics. She also worked for a decade at The Oxfordshire Complex Needs Service, a specialist service in the NHS for people diagnosed with personality disorders and complex needs. Her work tends to address the sticky debates that arise in clinical practice.

She has over 35 academic publications and has co-edited The Routledge Handbook of Philosophy and Science of Addiction. Pickard maintains an important thread between clinical work in the real world and her philosophical writings, attending to topics like the nature of mental disorders, delusions, agency, character, emotions, self-harm, violence, placebos, therapeutic relationships, decision-making capacity, the self and social identity, and attitudes towards mental disorder and crime.

In this interview, she discusses her novel and possibly controversial model for understanding addiction, the numerous shortcomings of the neurobiological model, the importance of centering patient agency, and her work in therapeutic communities.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Dhar: Dr. Pickard, you have written about the ‘responsibility without blame’ model for addiction. Could you tell us about this model?

Pickard: My experience of clinical work in a therapeutic community in England for 10 years is the basis for the model. I was a philosopher who found myself in a personality disorder clinic. I had very little clinical experience working with vulnerable and high-risk patients. What struck me was how my senior colleagues related to our patients, who we called members of our community.

I was really inclined to call that way of relating “holding somebody responsible but without blaming them.” It’s important that I hit it quite naive and innocent because it allowed me to see something that maybe people who work their way into clinical work become accustomed to.

When we are confronted with a person who does things we think of as morally wrong and seems responsible for doing them, we are incredibly inclined to blame them and become critical, judgmental, and write them off as a person to punish. We tend to withdraw from the relationship. What I saw in the therapeutic community that was so profoundly reorienting was that there was nothing inevitable about that response. It was perfectly possible to recognize that someone was responsible for wrongdoing, hold them responsible, and yet behave towards them with compassion, care, and concern.

This bringing together of responsibility and blame, which I had always taken for granted and which is very prominent in our society, suddenly felt unnecessary. The ‘responsibility without blame’ framework attempts to articulate this alternative way of relating that struck me so forcefully when I first hit this distinctive clinical context (therapeutic community).

Dhar: Could you tell us more about what therapeutic communities are, how they work, how are they different?

Pickard: They are really distinctive clinical environments. I have been in the US just a couple of years, and the model of psychiatric treatments strikes me as more medicalized and pharmaceutically based than in the UK.

Therapeutic Community is an approach to treatment that has proven effective for what I call disorders of agency—disorders where an important part of the diagnostic symptoms involves ways people behave. Some disorders like personality disorders or addiction are diagnosed through patterns of behavior. Therapeutic communities have proven to be effective for them.

I think they are wonderful, incredibly egalitarian. There is a flattened hierarchy to get beyond the power asymmetry between the doctor and the patient. We are all in it together. People are typically in therapeutic communities for a long time, so they have a journey. We call people members of the community, not patients. Some are more senior, others junior. The senior members often take an active leadership role.

Everybody’s part of each other’s therapeutic journey. On the one hand, they have responsibility for themselves and their behavior, but also responsibility for others in the group. The model is about creating a community where people can do the therapeutic work they need within a supportive environment that creates strong and authentic relationships between people. The idea is to help people be less dependent but more interdependent.

Dhar: What would it look like for a person with an addiction issue or problems with self-harm to be in a therapeutic community with the ‘responsibility without blame’ model?

Pickard: One of the techniques we use is contracts with the group. It’s a behavioral contract that involves an undertaking to stop doing whatever is the problem for you, whether that’s drinking or cannabis, or self-harm. People have to write that they will stop doing this and that if they find themselves wanting to, they will make a support call. They will reach out to somebody else in the group for support.

Typically, the first draft of the contract would say, “I will try not to self-harm or drink,” and the group would say, “No, you have to get rid of the word ‘try.’ You have to commit to doing it.” There’ll be a discussion. Eventually, the person would sign a contract that said they would stop, and if they were struggling, they would reach out for help. Then the entire group signs it and writes messages like “I’m here for you,” “call me if you need me,” “this is going to be hard”—messages of support, care, and solidarity. The person would go away and quite regularly stop the behavior and draw on the group for support.

But if a model sees this behavior as compelled by neurobiological pathology, then the idea of a contract stopping this behavior makes no sense. People carry around this piece of paper, read every day; it would be worn from use. Whatever it is doing for a person to help them, it’s not a cure for a neurobiological disease.

This is an example of how asking someone to take responsibility, that is, making changes they want to make and supporting them, has a tremendous clinical effect. We’re asking someone to stop a behavior, taking responsibility for doing that, asking for support if they need it. Asking for support is also key because there’s no blame; there’s concern, support, and compassion.

Of course, not everyone succeeds as these behavioral patterns are hard to kick. People lapse, but there’s no immediate blame, condemnation, and punitive attitude in the face of a lapse. The real question is what happened that, for example, after not drinking for three weeks, you lapsed—what was going on? The reason to understand that is so that lessons can be learned.

This idea of responsibility is fundamentally forward-looking. We’re thinking about responsibility because it helps people learn and change, not because of the way it licenses blame, punishment, or ostracization. It has a different function within a therapeutic community.

Dhar: About the neurobiological model of addiction, you write that partly it is scientifically unsound because the evidence doesn’t corroborate that it’s a simple brain disease in all cases. Secondly, we often use the neurobiological model, thinking it will help people reduce stigma, but it does the opposite—it leads to increasing levels of alienation, dehumanization, perceptions of dangerousness. Could you speak to the neurobiological model?

Pickard: Let me start with stigma. The brain disease model of addiction was most famously developed by Alan Leshner, who conceived of it both as scientifically credible but also as an antidote to stigma. If addiction is a brain disease of compulsion, then people who use drugs can’t help it. Rather than punish them through the state’s coercive tools of criminal justice, we should treat it as a public health problem.

The model assumes that when we apply a label like ‘disease,’ it has this de-stigmatizing effect. The findings of empirical studies on the effects of biogenetic labels on mental disorders, including addiction, are that they do help friends and family sometimes maintain relationships as removal of responsibility can remove blame. But in terms of the impact on public perception, they can increase ostracization, a sense of dangerousness, and a sense of otherness. Think how incredibly stigmatized other diseases are—leprosy, HIV, or even cancer. That something is a disease isn’t an obvious way in our society to reduce stigma.

But also, we as a society need to interrogate our own moral attitudes towards drugs and drug users, which the brain disease model doesn’t do. I personally don’t think there’s anything wrong with you for using drugs. Being real about moralism and condemnation in relation to drugs is something we need to approach directly. I don’t think you need the brain disease model to combat stigma effectively.

The evidence suggests that however hard it is for people to manage drug use, thinking that they’re completely powerless and that the concept of compulsion applies to addiction is a mistake. There is increasing evidence, both from animal and from human studies, that they respond to alternative reinforcers when they’re available. This means that if you give people a better choice than using drugs, they take it. So too with rodents.

This is extraordinarily important to recognize, given that we know that many people who struggle from addiction live in contexts where they don’t have many alternative goods. Addiction is associated with long-term mental health problems, socioeconomic adversity, poverty and suffering, and living in contexts of hopelessness and humiliation. Sometimes, the answer to addiction is not to fix something supposedly wrong with someone’s brain but to lift them out of poverty, giving them a chance for a meaningful life.

It’s incredibly difficult to stop using once you’re addicted, but compulsion is not an apt characterization. It stops us from looking at other interventions like socio-economic and educational interventions. It also disempowers the person.

Dhar: What does the neuro-biological model do to a person? This refers to Ian Hacking’s idea of the looping effect—the way we categorize things can change the experience of people. When you think you have a brain disease, and that’s how now you identify, it begins to shift your experience, so even if you had some level of control initially, you lose it over time. What happens to a person who’s told, “You, of course, have a brain disease”— where do you go from there? How do you work with someone if they have identified with the neurobiological model?

Pickard: What we empirically know about the impact of the brain disease label is that it often doesn’t help the patient. If you have a brain disease of compulsion, there’s nothing you can do; you’re stuck waiting for a doctor to fix you.

If we go back to that distinction between interdependence and dependence, it’s very much an idea of dependence. A sense of agency, potential, and possibility are important for people to stop using and make changes. That focus on agency, which the ‘responsibility without blame’ framework tries to support, is crucial.

But that’s not true for everyone. Some people seem to have found good in the brain disease model to understand their condition; they find it helpful. What I’m going to say is a bit controversial, but there’s a distinction between whether somebody’s self-conception, especially about their own relationship with their disorder, is helpful to them and whether it’s true.

From a clinical perspective, if I genuinely believed that the brain disease model was helping a person, the last thing I’d do is displace it. Your aim is to help people and not make them believe only what you think is true.

But that said, in my experience in therapeutic communities, some of the most important work people did was to give up on the biogenetic understanding of what was wrong with them. I don’t think that just because somebody believes they have a brain disease, therefore we should, without having a conversation, simply accept that. That conception about themselves can block them from making the changes they need.

Helping people put aside what sociologist Talcott Parsons called the sick role and find some agency was important to recovery in most cases, but not all cases. There is a lot of heterogeneity in experience, and the brain disease model has not recognized the heterogeneity. The etiology of what’s actually going on and what the person is struggling with may differ from person to person.

Dhar: This reminds me of a linguistic difference between English and Hindi when it comes to addiction. In India, the common perception of addiction is not as a disease or as something you are, but something you do. Often people who drink too much just stop drinking, and then they go back to drinking occasionally—it’s not considered a relapse.

Pickard: People self-label, and their sense of who they are and their identity becomes fashioned by whatever the label contains. The power of identifying as an addict, or being labeled as an addict, can keep you in a place where you’re an addict because if you stop using, then there can be this profound existential question which is, “Who am I if I’m not an addict.” And a language like Hindi, which doesn’t enable that essentializing, wouldn’t produce that kind of effect. That’s amazing!

Dhar: We know that most people simply age out of addiction, but stories of these people are never seen in the popular narrative in the broader culture. What factors keep some people from aging out and stopping while many can’t stop drug use?

Pickard: There are different reasons for different people, but here are some things we know.

First, many people who don’t mature out, as it’s called, are those with comorbid psychiatric disorders who come from socioeconomic positions of poverty, limited opportunities, discrimination, and ostracization.

Second, drugs have tremendous benefits. We pretend this isn’t the case. People take drugs for reasons; they provide relief from suffering when nothing else does.

Third, the best predictor of addiction severity is ‘coping motive,’ which means people who are severely addicted tend to be those who acknowledge that they use it because it helps with suffering. So, the reason why people don’t mature out is that they live really harrowing lives and drugs are the one thing that gives them some relief, some escape, and they know that.

But this does not apply to everyone, and here we should go back to identity. This is an important and unrecognized factor in why people don’t remit. There is the power of our identities and what feels comfortable because it’s familiar. People may not spontaneously remit because they don’t know who they would be or what they would do if they didn’t have that identity.

In addition, as a culture, we might not support them; we are stigmatizing and ostracizing drug users. People may have communities of users who are friends, have real bonds and relationships. Then, in giving up the drug, you give up not only your sense of self but also your community, maybe those who supported you when others haven’t. This is a really important piece which the brain disease model obscures.

Dhar: The ‘community of users’ reminds us of the experiments with rats who were made addicted to morphine and placed in community playrooms versus alone. Many ended up de-addicting themselves based on the environment.

Pickard: You’re referring to Bruce Alexander’s famous experiment called Rat Park. There have been difficulties replicating that, but the take-home messages have been absolutely confirmed by more well-controlled animal models, which offer rodents a choice between the drug and an alternative good.

One of the most amazing recent studies was by Marco Venniro, who gave a choice between any number of drugs, heroin, methamphetamines, versus social reward. These were socially housed rats and not deprived of social reward. Quite extraordinarily, 100% of them opted for the social reward over the drug.

What’s so interesting is that experimentalists effectively impose this choice on a rat: either a drug or a social reward, and the context of a ‘community of users’ is the opposite of that —you don’t get the social reward unless you have the drug. That’s part of why sometimes drugs can be so powerful because they’re so connected to our communities, our identity.

Dhar: Let’s talk about a potential conflict. On the one hand, you have talked about the structural determinants like poverty making addiction worse. But you also write about inculcating a sense of responsibility and agency. How do you reconcile this idea for people who have very little power? For example, how do you deal with a single mother of two kids, who has no health insurance, three jobs, takes the bus to work, and is trying to manage her addiction to prescription medication? Does she have any agency? Because there is a huge difference between making someone feel empowered and them actually being empowered.

Pickard: I worry that some of the language that the model uses, like responsibility, can be hijacked for blaming purposes. People make choices and have agency relative to their circumstances. It’s not just about other people’s choices and responsibility, but our own.

In the kind of context you described, to say you need to take responsibility is absurd. We need to give this person the choices to which any human being is entitled. The last thing this model is supposed to do is always put the emphasis on a person to sort things out. It’s on us to let people live in contexts where basic human needs like home, work, food, warmth, and care are not met.

With any theory, we end up making general claims as if it’s always true. There will be exceptions. The theory does not say that there’s never a case where someone has no agency. Of course, there are. The question is whether that’s a good model for understanding the majority of the cases.

Dhar: So, some things work sometimes for some people, and experience comes before theories, and we have to be able to appreciate the diversity of experience rather than stick to our pet theories.

Pickard: I feel we use biogenetic labels to protect us from two things. Those of us who care about our patients don’t want to blame, so we use a biogenetic label to protect us from that tendency. But we also use them as a defense mechanism to protect us from our own collective responsibility in creating conditions that allow mental disorders to flourish.

These labels put our focus squarely on the idea that something’s wrong with the person’s brain, as opposed to something’s wrong with the material and social conditions in which we are complicit. They’re much more for us than they are for the person.

Dhar: Have you ever received any pushback for this model where people erroneously conclude that you are blaming people?

Pickard: When I first came to the US, I was really surprised at how angry people were that I even questioned whether addiction, in all cases, is a brain disease. That’s one place, but it really has to do with a mistaken belief that we stigmatize everybody if we don’t blindly cleave to the brain disease model.

I never had much pushback from people with mental health problems. It’s really important to articulate the model with nuance—responsibility comes in degrees because agency comes in degrees. That’s something I emphasize, and my experience with people is that they’re glad to have their choices recognized. It can be incredibly empowering to finally have someone acknowledge that there is a choice, even if it’s limited.

I haven’t had much pushback from clinicians or psychiatrists. I have had pushback from philosophers. I think part of the reason is many philosophers don’t have clinical experience or spend time with a diverse population of patients. Maybe most of their experience with mental disorders comes from family or friends, and that’s where excusing someone from responsibility is productive to a personal relationship.

Here’s another explanation: the philosophers often don’t believe that it’s possible to have a forward-looking notion of responsibility that’s divorced from blame. If you don’t buy that, maybe for philosophical reasons, then you’re going to be very loathed to attribute responsibility because it immediately leads to blame.

Dhar: When I came to the US, I notice people sometimes had difficulty negotiating contradictions; it’s built into a lot of the philosophy. There is a whole argument about science versus religion, whereas, in India, scientists will send Mars Rovers into space after a religious ceremony. Responsibility without blame might seem like a contradictory idea, but they are not if you understand that the nature of things is rather fluid and dynamic.

Pickard: A lot of the work I’ve done is trying to find the middle ground. Much Western thinking, particularly in the US, is quite black and white. It’s unhelpful, and we find it in the discourse around drugs.

One group thinks drugs are just bad, typically advocates for the brain disease model. Another emphasizes only the benefits of drugs. The truth is in between.

Drugs have tremendous benefits and tremendous risks and costs. Any individual or society needs to think about how to manage both and get the most out of them while protecting against the costs. That nuance is missing from public discourse.

***

MIA Reports are supported, in part, by a grant from the Open Society Foundations

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Writing in the HealthWatch Newsletter, Frances explains that industry corruption is no longer the only factor behind the skyrocketing use of antidepressants, given that many of the drugs are now off-patent and therefore less profitable for pharmaceutical companies. Other reasons must be identified if public health advocates are to reduce the harm caused by inappropriate prescriptions.

Despite the growing popularity and usage of antidepressants, research has raised serious doubts concerning their efficacy for depression. Industry corruption has been one of the main reasons behind their continued popularity. Ghostwriting, misleading conclusions, PR campaigns, etc., have all been used to push antidepressants into the market despite concerns about the efficacy and safety of long-term use.

Other studies have raised concerns over the withdrawal and side effects caused by antidepressants. The acknowledgment of withdrawal effects has been seen as a victory for service users who, despite years of being told that withdrawal is mild and short, insisted on having their voices heard. All of this has led to an increasing focus on helping patients safely withdraw from these drugs, with experts suggesting months of slow discontinuation.

Frances writes this new article at a time when the discussion about the efficacy and safety of antidepressants has received mainstream attention, at least in countries like the UK. Once the chair of the DSM IV task force, Frances has become a fierce critic of overdiagnosis and overprescribing in psychiatry. He has written numerous books and articles criticizing lowered diagnostic thresholds and the unscrupulous inclusion of certain diagnostic categories in the DSM-V.

Frances writes that despite these drugs being off-patent, their use has grown exponentially in the US and the UK. At the same time, there is little evidence suggesting that psychiatric disorders have increased to warrant such an increase in prescription. He gives several reasons for this increase.

First, he notes that most of the prescribers are general practitioners who do not know their patients very well and often see them only on a day when the patient is in the midst of deep suffering. Given the lack of history with the patient, they may feel pressure to prescribe antidepressants to address the immediate symptoms.

Frances writes that half the patients who begin to take the drugs stay on them for at least two years, and many will stay on them for decades. For people with mild or moderate symptoms, this is “the worst practice” as most of these symptoms would likely have dissipated over time, with help in stress reduction or when the stressor went away.

He notes that there are two primary reasons people stay on antidepressants for years. The first is the effect of misattribution. People who start feeling better after taking the antidepressants might assume that it is due to the drugs that they are feeling better. In most cases, those with mild symptoms would have just started feeling better over time or as the stressful event resolved itself. Thus, once they believe that these pills work, it is difficult for them to stop.

The second important reason for the continued use is withdrawal symptoms. Frances notes that patients can experience debilitating withdrawal symptoms when they stop their antidepressants. He writes:

Given that there is insufficient information regarding the severity of antidepressant withdrawal in the medical community and among the lay public, withdrawal is often confused with relapse resulting in a vicious cycle of long-term prescribing.

He further problematizes their increasing use in children and adolescents despite evidence that they might be linked to higher rates of suicide. Frances maintains that antidepressants are beneficial for severe depression, where placebo and psychotherapy might fail. According to Frances, if we can correctly ensure that only those with severe symptoms receive antidepressants and others are treated with time or therapy, we would be on the correct path.

Frances writes that the placebo response is powerful for people with milder and moderate symptoms. In other words, these people benefit from just thinking that they are on antidepressants but that severe depression might require actual antidepressant usage.

As a solution to this growing problem of over-prescription, he suggests having general physicians take time to know and understand their patients and ensure that milder symptoms are treated with watchful waiting, stress reduction techniques, and advice. Moderate depression should first be treated with psychotherapy instead of medication.

But diagnosing depression can also be tricky. As Frances has previously noted, diagnostic inflation and lowered thresholds have made more and more people fit into psychiatric categories. The use of self-report inventories, which are commonplace among general practitioners, contributes heavily to overdiagnosis, leading to overmedication. The use of screening instruments should be restricted for groups at high risk, such as people with a history of suicidal behavior.

Frances ends his article by noting that while training general practitioners and having them take time to get to know their patients is costly and time-intensive, in the long run, it protects patients from the harms of unnecessary medication. Lastly, for those who can overcome their depression through other means, it also provides a sense of strength and resilience.

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Frances, A. J. (2021 April 22). Why are antidepressants so overprescribed? And what to do about it? NewsWatch, 115, 4-5 (Link)

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The authors have collaborated to petition the Scottish and Welsh governments, demanding attention be given to the problems created by antidepressant dependence and other adverse effects.

For decades antidepressants have been considered the first line of treatment for depression and other psychological issues. There is growing evidence that antidepressants may be less effective and have more risks than originally thought. Critics have noted that these concerns emerged as soon as antidepressants were introduced but were effectively silenced. More recently, withdrawal was repackaged by the pharmaceutical industry as “discontinuation syndrome” to make it more palatable.

Recent research has found that antidepressant withdrawal can be long-lasting and severe, contrary to popular belief. As a result, top researchers and organizations have begun to acknowledge the dangers of antidepressant withdrawal and make changes to their guidelines.

Brown and Lewis’ article points to the harms of misdiagnosing patients who are experiencing withdrawal with MUS or FNDs. Brown has witnessed this happening to her clients, and Lewis experienced these adverse effects first-hand.

In the opening statement of her 2017 petition, Brown presented evidence to the Scottish government where she summarized her clients’ experience. She represented clients whose experience with benzodiazepine and antidepressant withdrawal was often disregarded and even belittled by prescribers. She further noted that while clinical trials of drugs are short-term, they are often prescribed long-term, even indefinitely.

Often online self-help groups are the only source of support, empathy, and advice for struggling patients. When patients seek help, doctors often consider them gullible or troublesome and sometimes diagnose them with a personality disorder or MUS and FNDs.

In her petition to the Welsh government, Lewis stated that the NHS staff is being trained and educated to look at what are often withdrawal symptoms as MUS or Bodily Distress Syndrome (BDS). As a result, the actual physiological effects of changing, starting, and discontinuing antidepressants are completely ignored.

The authors note that this physiological dependence often creates problems in the fight/flight/freeze response, leading to excruciating akathisia–a desire to run away from one’s own body.

The petition included stories from over a hundred patients. These stories and other evidence were also covered in a recent research paper co-authored with other researchers. This paper traced similar misdiagnosis of drug-related symptoms as MUS, FNDs, or relapse.

They noted that there were glaring holes in the system, that prescribers needed to be better educated, alternate non-pharmacological treatments deserved more attention, and patient feedback had to be taken seriously. They write:

The authors point out that many discontinuation symptoms (dizziness, racing heart, nausea, etc.) are translated by assessment tools that portray them as medically unexplained symptoms to clinicians.

Lewis noted that Rosendal’s paper on medically unexplained symptoms and Bodily Distress Syndrome (BDS) comes closest to describing her own experience of antidepressant withdrawal. Rosendal clustered the symptoms into four categories: breathlessness, heart palpitations, diarrhea, nausea, muscular pains, weakness, numbing, fatigue, memory impairment, and concentration problems. Given the overwhelming similarities, Lewis concludes that:

The authors note that despite evidence of antidepressants causing neurological problems, there is little to no recognition from neurologists that drugs meant to affect the central nervous system could be the reason for its dysfunction. Thus, neurologists are still chasing FNDs instead of paying attention to the withdrawal effects of antidepressants, which can include neurological impairment.

They conclude by noting that these withdrawal effects are known, but prescribers have turned a blind eye to them and are instead mistaking them for MUSs, BDS, and FNDs. This could cost the NHS a lot of money, but more importantly, it costs patients their health and well-being.

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Brown, M. Lewis, S. (2021). The Patient Voice: Antidepressant Withdrawal, Medically Unexplained Symptoms, and Functional Neurological Disorders. Journal of Critical Psychology, Counselling, and Psychotherapy, 20 (4), 14-20. (Link)

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