Talking About Psych Diagnoses and Drugs: A Primer for Parents & Professionals
By Paula J. Caplan, PhD
Decades ago, a psychiatrist I respected greatly asked if I would meet with a young patient of his because he had no idea what was happening with the child or how to advise his parents. The parents brought the little boy, who was almost three years old, to my office and told me that he had never spoken but was happy and affectionate. They were beside themselves with worry because they believed that if their son were properly diagnosed, the solution to his silence would become clear. The many different professionals to whom they had taken him had suggested a variety of possible psychiatric labels, and the parents were especially afraid that he might be “autistic.” However, they had read the widely used Diagnostic and Statistical Manual of Mental Disorders (DSM) and seen that he did not meet all of the requisite criteria for that label.
I spent some time taking a detailed history of the child from his mother and father, testing him as well as I could, and observing him carefully. Then I told the parents that they were right: He did not fit the DSM listing for autism. I also told them I had heard nothing in the history that might explain why he was not speaking, that I did not know of any certain way to get him to speak, that there was no way to predict whether or not he would eventually speak — and if he would, when that might be.
I had assumed that the parents would be upset by what I had told them, but their reaction was one of great relief. They replied that they had read everything they could find about his failure to speak and about “autism” but had not found anything that shed light on their child’s difficulty. They had therefore been dismayed when so many professionals tossed out various psychiatric labels and recommendations for treatment; they knew that the criteria for those labels failed to fit their child. So it was a good experience for them to hear from me that I did not know what was happening, either, because they were tired of people trying to pretend they did.
Shifting the Focus
I agreed and said that what was important was to look honestly at what could be known about a particular person and to think critically about relevant, high-quality research (where there is any) and about what else is known about the kinds of things that can be helpful. I added that it was important to monitor over time whether the suggested approaches are helpful and to be prepared to try other things if they are not. Crucial to my thinking was my concern that much of what is called “treatment” is problem-focused rather than strength-focused and is pathologizing, which often adds new sources of trouble.
I discussed with these parents the importance of ensuring that their son would not come to feel frightened or ashamed about not speaking. Instead, I advised them to build on his strengths by continuing to interact lovingly and supportively with him and teaching him — in a way free from high pressure or panic — whatever he was capable of learning. I encouraged them to continue to provide him experiences of delight and to let him see the joy he inspired in them.
Unfortunately, I lost touch with this family, so I don’t know what became of the child. But my experience with them reinforced my belief in the importance of telling people the truth about what is and is not, or can and cannot, be known about their child. In this way, parents come to appreciate that labels and treatments offered by professionals in the fields of emotions and behavior are far from being grounded in hard science. The process of understanding what is troubling someone, and what can be done about it, needs to be imbued with as much thoughtfulness, critical thinking, and humanity as possible.
The Limits of Diagnosis
In the course of my consultation with that little boy’s family, I emphasized important points that I still tell every parent who asks me. These are documented at length in my book They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal.
- Psychiatric categories are not based in solid science, as is widely promoted and believed. I learned this after serving for two years on committees that were creating the fourth edition of the DSM and had seen with my own eyes that the manual’s authors often ignored, distorted, and even lied about good scientific research if it failed to support what they chose to include or exclude. In addition, the authors often presented junk science as though it were good science if that could be used to support their decisions.
- What qualifies as a “disorder” reflects DSM authors’ biases. Hundreds of categories of DSM disorders have been constructed by a small number of mostly white, male, American psychiatrists who shared many beliefs about what should and should not be called mental disorders. Their choices were akin to decisions about which celestial stars to “connect” to form constellations.
- Psychiatric diagnosis is not reliable. It has been found that two therapists seeing the same patient have a high probability of giving that patient different DSM labels and that a single patient often got very different labels at points in treatment.
- DSM labels have not been helpful in identifying the causes of distress or effective interventions. Human behavior has a multiplicity of determinants and is so complex that it is often impossible to know what caused a particular problem or difference, much less the appropriate response to it.
In other words, I explain that it is a myth that if someone just gets the right diagnosis, it will be clear which courses of action might be helpful in easing their suffering.
A troubling exception to this fact is that many school systems refuse to provide help to any child who needs it unless the child first receives a pathologizing diagnosis. For such situations, I advise parents that the reason for assigning a label is solely to get the child appropriate help and that they ought to do everything possible to assure their child that she or he is not “crazy” or “stupid.” This is a challenging task, given the damaging power of labels, but until we transform the system, it may be the best we can do.*
The Matter of Medication
Once a child receives a diagnosis, a prescription for drugs often follows. Two criteria always should be (but rarely are) met when any professional recommends any type of treatment:
- If I recommend X, I should disclose both the full range of benefits and any adverse effects that X has been known to cause. When X is a drug, I should explain that many drug companies have been shown to conceal many adverse effects, so that they cannot be certain that they have unearthed all proof of possible harm.
- If I recommend X, I should explain why and also present the entire range of approaches that have been shown to be helpful to at least some children with the kind of problem the parents are trying to address. These approaches should, of course, include the huge number that do not involve drugs. More than two dozen of these approaches, which are effective for both children and adults, can be viewed here.
As MIA’s Robert Whitaker scrupulously documented in Anatomy of an Epidemic, research from the National Institute of Mental Health and the World Health Organization, among others, has revealed that every psychiatric drug on the market helps some people for at least some period of time. Overall, however, it tends to harm more people than it helps. Parents should be made aware of these findings.
Moreover, it is vital for parents to understand that a great many doctors prescribe psychiatric drugs “off-label” — that is, without FDA approval for use in children and youth. This is particularly alarming, given that the FDA is often appallingly lax in the standards it sets for approving drugs even for adults.
Furthermore, very few long-term studies of drug effects have been performed, so the drugs’ effects on developing infants, children, and adolescents tend to be largely unknown. And the interactions between two drugs, much less among three or more, remain almost entirely unstudied.
In light of these serious problems, parents need to know that when children take psychotropic drugs, they effectively become “guinea pigs.” And this nearly always happens without parents’ knowledge or consent.
The Importance of Informed Consent
Many professionals who prescribe psychotropic medication often take the view that they should not alert parents or children about a drug’s possible negative effects. They often rationalize that if they tell patients or their families about the bad things that might happen, people may imagine that the drug is having those effects even when it is not. I believe this practice is deeply unethical, running counter to the principle of informed consent.
I often warn parents that when a child (or adult) is put on a psychiatric drug and does have an adverse reaction to it, many clinicians fail to consider that these experiences may be caused by the drug itself. Instead, the professional leaps to the conclusion that “This child is sicker than I thought!” Rather than withdrawing the drug or reducing the dosage, they often increase the dosage, add another drug (nearly always a more dangerous one), add a more serious psychiatric label to the child, or some combination of the above. I urge providers to rethink this practice and encourage parents to challenge any provider who acts this way and to insist that they fully explore the possibility of adverse reactions.
Parents can, of course, choose to have their child take one or more psychiatric drugs, but they should strive to be as fully informed as possible before making that (or any) choice about their child’s care. And again, professionals need to inform them that drug companies often conceal the negative effects of their products, so that fully-informed consent may not even be possible.
Parents have the right to ask providers for references to research about what they are recommending. I remind them that while they may not be a clinician or researcher themselves, they possess the ability and intelligence to read research reports and to think critically about their merits. If anything, the provider ought to offer to review the relevant research with them and guide them through this process. I also explain that if they are too intimidated by medical or scientific writing to go through that process, they can ask to be connected with someone who can assist them.
Granted, it isn’t easy to stand up to a doctor or other credentialed professional without some scientific evidence in hand. It would be wonderful if every high school student were taught the differences between research that is well-designed, well-executed, and responsibly interpreted and research that is poorly done. That would put parents in a better position to evaluate service providers’ recommendations.
Barring that, Mad in America’s Parent Resources section’s Drug Information pages offer summaries of the latest science on the major classes of psychoactive drugs prescribed to children and youth. The authors of that section also discuss non-drug approaches to the problems for which doctors typically prescribe them. (Editor’s note: See links at bottom of the page.)
Giving a child a psychiatric label and psychotropic drugs often greases the skids into the juvenile justice system and later the adult prison system, and possibly into permanent enrollment in the disability system. I, along with many clinicians, teachers, and even probation officers have seen that using other kinds of approaches can be helpful, healing, and strengthening.
Our heavily psychiatrized culture often makes it seem that alternative approaches cannot possibly be effective because they seem less scientific than traditional approaches such as psychotherapy and drugs. (As explained above, psychiatric diagnoses are not scientific, and good science does not support the effectiveness and safety of psychiatric drugs.) But there is ample evidence for the effectiveness of non-drug approaches to easing human distress: involvement in the arts, community service, political action, physical exercise, exposure to nature, and spiritual practices. There is also much scientific support for the importance of friendships and freedom from poverty, oppression, and violence in sustaining emotional resilience. In testimony to the Rhode Island state legislature many years ago, I spoke against cutbacks in funding for the arts in schools, saying that if every student participated in the arts from kindergarten onward, there would be far fewer people in prisons and mental hospitals.
De-pathologizing and relativistic approaches are also powerful and effective ways to help both children and their parents. Dr. Vincent Felitti, a leader of research into Adverse Childhood Experiences, has pioneered the de-pathologizing approach. Here, practitioners switch from asking the sufferer, “What is wrong with you?” (as if they have a disease) to “What happenedto you?” This emphasis helps the sufferer to understand the origins of their troubles in ways that avoid victim-blaming or pathologizing. It also makes it easier to focus on the kinds of support and help will be likely to move the person beyond the effects of trauma and into a happier life.
A relativistic approach involves moving beyond the typical we/they thinking that classifies some people as “mentally ill” and the rest as “normal.” It can include making it clear to the child that her or his difficulties result from reacting to distressing experiences that would upset anyone. This reassurance helps to reduce their feeling that something must be wrong with them because of the ways they have coped with upset or trauma.
It is also helpful to make it clear that behavior that society and traditional mental health professionals often describe as pathology may be the best ways a child has found to cope in the face of adversity. Thus, these behaviors can be seen as strengths because of their survival value. Once adults have established respect for these coping mechanisms, giving the child greater self-respect, it becomes easier to help that child look at the ways their coping styles may get them into difficulties they’d prefer to avoid — and to help them find less risky ways to cope.
The relativistic approach can be especially useful in assisting children who have learning “disabilities” or differences. This involves teaching both children who are struggling with school tasks and their families, classmates, and neighborhood friends about the great array of individual differences that characterize human beings. We tell them that everyone of every age has relative strengths and weaknesses; that these traits vary enormously from one person to another; that many of them are innate and nothing to be ashamed of; and that those whose weaknesses fall into certain categories (school subjects especially) are the ones who get labeled disabled. And we reassure them that many other people have major problems with other kinds of tasks, as well as abilities that happen not to be emphasized in school.
Knowledge into Action
The material in this article is easy to understand but far too little known. For parents, however, it can make a world of difference to have this kind of information about the truth about psychiatric diagnoses and psychotropic drugs, as well as lists of non-pathologizing, non-drug approaches that help reduce emotional suffering and other difficulties. Armed with these facts and suggestions, they can save enormous amounts of time and energy, using their emotional and other resources in ways that are less likely to harm and more likely to help their child.
* Something similar is true for military veterans, who cannot obtain VA benefits and “services” unless they receive a psychiatric label. To those veterans, I say that, since we cannot change the system in time to help them, if they want those benefits or services, they should try to get the least serious-sounding diagnosis. However, they should be aware that disastrous results can come from even the mildest-sounding psychiatric label. I tell them that in their hearts, they should know that they are not “mentally ill” but rather are having deeply human reactions to war, to military rape, or to other traumas.
Mad in America Psychotropic Drugs in Children and Adolescents pages, by drug class:
Mad in America Non-Drug Therapies pages, by diagnostic label:
Paula J. Caplan, PhD, is a clinical and research psychologist, activist, Associate at the DuBois Institute, Harvard University, and the author of 11 books, including one that won three national awards for nonfiction and two about psychiatric diagnosis. Her books include They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal and the edited Bias in Psychiatric Diagnosis. This article was originally published on madinamerica.com. Reposted with permission.
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