May has been a dispiriting month for psychiatry and a sad and worrying time for our patients. Three of the leading mental health organizations have squabbled among themselves — promoting silly and competing ‘paradigm shifts’ while ignoring the unmet needs of our patients.
The mischief started with DSM 5 and its rogues’ gallery of untested diagnoses that turn everyday life problems into mental disorders. Per DSM 5, people who don’t need help will often get it (to their detriment), while those desperately in need of help will continue to be shamefully neglected. And to crown the irony, APA gets to collect fat publishing profits for producing a manual that is both unnecessary and unsafe.
Then, to compound the mess, the National Institute of Mental Health issued an inflammatory press release criticizing all of current psychiatry — for being brainless and invalid. NIMH made it sound like psychiatric diagnosis without biological testing is worthless.
This was mindless. DSM 5 certainly deserves to be roasted, but the NIMH sneak attack was a unfair and inaccurate broadside against all of psychiatric practice. NIMH was trumpeting its new research agenda to support its request to Congress for an expanded brain research budget (the only thing it really cares about). The statement failed to admit that NIMH won’t possibly be able to deliver any real progress in clinical care in this decade (and perhaps for many more). NIMH was taking down current psychiatric diagnosis, but offering nothing in its place.
Then the British Psychological Society joined the silly season by also suggesting that we suddenly discard our current system of psychiatric diagnosis — this time in favor of a psychosocial paradigm that would make obsolete the valuable (if limited) old timers like schizophrenia and bipolar disorder. Of course, no details were offered and indeed no new model of psychosocial diagnosis actually exists. A mirror image of NIMH wishful thinking about the future with no relevance to pressing present needs.
To bring some wisdom and perspective to this whirlwind of silliness, I turned to Barney Carroll — one of the great pioneers of biological psychiatry and perhaps the world’s leading expert on the role of biological testing in psychiatry.
Dr Carroll writes:
Here is a recent quote from the Director of NIMH: “The weakness (of DSM-5) is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure.”
After a few awkward days, the chair of DSM-5 issued this agreement: “In the future, we hope to be able to identify disorders using biological and genetic markers that provide precise diagnoses that can be delivered with complete reliability and validity.”
Patients receiving services are left to wonder whether (currently unavailable) laboratory tests are essential to the validity of their psychiatric diagnoses and the value of their treatments? Is psychiatry lost now in the wilderness without them?
Having biological tests is not a precondition for recognizing clinical disorders. It would be great to have them, but much good diagnostic work can be done without tests and their lack is not unique to psychiatry. The availability of biological tests is neither necessary nor sufficient for good patient care.
So many conditions in medicine are diagnosed without any conclusive diagnostic tests. Think migraine. Think multiple sclerosis. Think chronic pain. Indeed, clinical science correctly recognized many diseases long before laboratory tests came along for confirmatory diagnostic application. Think Parkinson’s disease, Huntington’s disease, epilepsy … it’s a long list.
We need also to be clear that laboratory tests are not an automatic gold standard of evidence for validity. Indeed, in many medical specialties, indiscriminate screening with laboratory tests has caused more harm than good.
Laboratory measures are the servants of clinical science, not the other way around. Most laboratory tests will helpfully revise diagnostic probabilities, rather than conclusively rule in or rule out a diagnosis. Clinical judgment must always be used in their interpretation.
Disease constructs take form through iterative attention to signs, symptoms, course of illness, response to treatments, family history, and laboratory data. This process of convergent validation has given us an A-list of psychiatric diagnoses that are candidates for future biological tests: psychosis, mania, melancholia, obsessive-compulsive disorder, vascular depression, crippling anxiety, panic disorder, dementia, autism, delirium, catatonia, and more.
The fact that we have not nailed the pathophysiology of these conditions does not invalidate the diagnoses. We knew about Huntington’s disease and correctly diagnosed it for 110 years before its genetic basis was discovered.
Psychiatric diagnosis is certainly imperfect — but so is much of diagnosis throughout medicine. And whatever the current limitations, psychiatric diagnosis is useful and essential. There are no ‘paradigm shifts possible til we learn a lot more. To imply otherwise is misleading and confusing to patients.
Thanks Barney for clearing the fog with your common sense and deep experience. I would have said just the same things, but no one would have any reason to believe them. Your words carry unique authority given your lifelong commitment to establishing biological tests in psychiatry.
The biological reductionism espoused by NIMH and DSM 5 is not only naïve and wrong — it is bad for patients. As Hippocrates said: “It is more important to know the patient who has the disease than the disease the patient has.” Knowing a person will always go well beyond knowing the lab test result. A Bio-Psycho-Social model is essential in all of medicine, but especially in psychiatry.
The NIMH and DSM 5 are eagerly chasing the holy grail of biological reductionism. But the brain will reveal its elusive secrets only in very small packets and only with the passage of many decades. Don’t look for home runs or walks — be satisfied with singles and be prepared for many strikeouts.
Using a polio analogy, the NIMH director once said that he wants his institute to develop vaccines, not iron lungs. His ambition is to understand the biological roots of mental illness and to root them out. I fear that focusing on an over promised golden age in the future takes our eye off the obvious needs of patients in the present.
The delivery of mental health services in the US trails far behind most of the rest of the developed world. We have one million psychiatric patients in prison, most of them for nuisance crimes committed because they did not receive adequate care or housing in the community.
The NIMH seems to be totally indifferent to their needs and does nothing to promote their cause. It silently allows our country to engage in a barbaric mismanagement of the mentally ill that was abandoned elsewhere two centuries ago. NIMH would do well to promise less for the future and instead deliver more in the present. And DSM 5 should not have added new and questionable disorders at the fuzzy boundary with normal that distract attention and pull resources away from the unmet needs of the really sick.
We need biological research to improve the care of patients in the future, but we shouldn’t be so dazzled by the (over)promise of neuroscience that we callously neglect our patients who are suffering now.
The British Psychological Society has issued a press release that rivals the sillyness of DSM 5 and the National Institute of Mental Health.
Mental health practitioners and patients are poorly served by the organizations most entrusted to represent them.
We have entered a silly season of interacting absurdities committed by the American Psychiatric Association, the National Institute of Mental Health, and the British Psychological Society.
It started with DSM 5 including untested new diagnoses that will mislabel millions of the worried well and distract resources away from people who really need help.
Then, NIMH got into the act with a press release that recklessly renounced all DSM diagnosis as invalid. But NIMH failed to admit that it has nothing to offer in its place except the promise of a future biological understanding of mental illness — something that will take decades to deliver, assuming it can ever be delivered at all. Clearly, NIMH was puffing up its research agenda to gain congressional support for President Obamas brain initiative — a greatly oversold (but nonetheless worthwhile) endeavor.
But no one at the institute paused to calculate the possible harmful impact on patients — who might assume that psychiatry doesn’t know what it is doing, so why stick with needed treatment.
And NIMH should be called NIBR (National Institute Of Brain Research) since it consistently fails to live up to the Mental Health part of its name and seems totally oblivious to the current needs of the patients it is meant to help.
Example-NIMH never issues similarly bold press releases to decry the fact that patients are suffering from draconian budget cuts and our disorganized nonsystem of mental health care. It should, but doesn’t, draw press attention to the one million psychiatric patients now languishing in prisons because of nuisance crimes that could have been prevented had they ready access to community treatment and decent housing.
And now the British Psychological Society has joined the parade of extremist posturing. BPS proposes its own radically different (but equally quixotic) paradigm shift — renouncing the brain as a source of mental illness and questioning whether schizophrenia and bipolar disorder are useful constructs for current diagnosis and treatment.
As substitute, BPS provides an empty and vague promise that mental health problems might somehow be framed in a completely new paradigm emphasizing primarily psychological and social causations. All very pie in the sky stuff with no real world foundation.
This triad of Alice Through The Looking Glass foolishness would be funny were it not so sad and dangerous. Absurd NIMH biological reductionism finds its mirror reflection in absurd British Psychological Society pscho-social reductionism. Leaders of powerful organizations (who should know better) seem to be suggesting that complicated mental health problems can be reduced to their contrasting simple answers. But each has nothing substantive on offer — just dueling inflammatory and inaccurate press releases that muddle the issues and mislead the public.
We need to return to a three dimensional model of mental illness that attends to the biological, to the psychological, and to the social.
We need a diagnostic system that focuses on the basic disorders that can be assessed reliably and treated effectively.
We need additional resources so that people who need treatment can get it.
We need leaders who bloviate less and do more to meet the current unmet needs of patients — leaders who are not so enchanted with their utopian grand designs for the distant future that they lose interest in the urgent problems we face in the present.
Ambition has blinded the leaderships of DSM 5, the NIMH, and the BPS. Each has prematurely promised a grandiose paradigm shift when none is remotely possible. Paradigm shifts emerge from new scientific findings — not from wishful thinking or public posturing. A little Hippocratic humility would be most welcome.
Humpty-dumpty institutional pride has led to a free fall in credibility with grave collateral damage to patients and practitioners. Patients confused by these ridiculous controversies may well lose faith and miss out on needed treatment. Practitioners (who are themselves generally humble and competent folk) deserve leadership that is not so arrogant and bumbling.
It is past time to have just one thing in mind in preparing diagnostic manuals or statements to the press. Will this help or hurt our patients’ access to quality care? All three organizations have very badly flunked this test.
So I offer two simple pleas to the American Psychiatric Association, to the National Institute Of Mental Health, and to the British Psychological Society. First, spare us your paradigm shifts. Second, do whatever you can right now to promote better care for our patients.
The flat out rejection of DSM 5 by National Institute of Mental Health is a sad moment for mental health and an unsafe one for our patients. The APA and NIMH are both letting us down, failing to be safe custodians for the mental health needs of our country.
DSM 5 certainly deserves rejecting. It offers a reckless hodgepodge of new diagnoses that will misidentify normals and subject them to unnecessary treatment and stigma.
The NIMH director may have hammered the nail in the DSM 5 coffin when he so harshly criticized its lack of validity.
But the NIMH statement went very far overboard with its implied promise that it would soon find a better way of sorting, understanding, and treating mental disorders. The media and internet are now alive with celebrations of this NiMH ‘kill shot’. There are chortlings that DSM 5 is dead on arrival and will perhaps take psychiatry down along with it.
This is misleading and dangerous stuff that is bad for the patients both institutions are meant to serve.
NIMH has gone wrong now in the very same way that DSM 5 has gone wrong in the past — making impossible to keep promises. The new NIMH research agenda is necessary and highly desirable — it makes sense to target simpler symptoms rather than complex DSM syndromes, especially since so far we have come up empty. And the new plan will further, and be furthered, by the big, new Obama investment in brain research. But the likely payoff is being wildly oversold. There is no easy solution to what is in fact an almost impossibly complex research problem.
Isaac Newton said it best almost 250 years ago, "I can calculate the motions of the heavens, but not the madness of men." Figuring out how the universe works is simple stuff compared to figuring out what causes schizophrenia. The ineffable complexity of brain functioning has defeated past DSM hopes and will frustrate even the best NIMH efforts.
Progress in understanding mental disorders will necessarily be slow, retail, and painstaking — with no grand slam home runs, just occasional singles, no walks, and lots of strikeouts. No sweeping explanations — no Newtons, or Darwins, or Einsteins.
Experience teaches that there is very little low hanging fruit when you try to translate the results of exciting basic science into meaningful clinical advances. This is true in all of medicine, not just psychiatry. We have been fighting the war on cancer for forty years and are still losing most of the battles.
If it has been so hard to figure out how simple breast tissue goes awry to become cancerous, imagine how many orders of magnitude more difficult will it be to eventually understand the hundreds or thousands of ways neurons can misconnect to cause what we now call schizophrenia.
We have learned many remarkable things about how our bodies work. But it is much easier to understand normal functioning than to figure out all the ways it can become abnormal. The NIMH effort may (or may not) be the wave of the future, but most certainly, it can have no impact whatever on the present.
Meanwhile, APA and NIMH are both ignoring the very real crisis of mental health misallocation in this country. While devoting far too many resources to over-treating ‘the worried well,’ we have badly shortchanged the severely ill who desperately need and very much benefit from our help. Only one third of severely depressed patients get any care and we have one million psychiatric patients languishing in prisons because they had insufficient access to care and housing in the community. As President Obama put it, it is now easier for the mentally ill to buy a gun than to get an outpatient appointment — tragic on both counts.
APA and NIMH are both on the sidelines, doing nothing to help restore humane and effective care for those who most need it. DSM 5 introduces frivolous new diagnosis that will distract attention and resources from the real psychiatric problems currently being neglected. NIMH has turned itself almost exclusively into a high power brain research institute that feels almost no responsibility for how patients are treated or mistreated in the here and now.
We are spending fortunes on unnecessary drugs for the worried well while slashing budgets for the care of the really sick. A meta-analytic comparison of treatment effectiveness across medical specialties showed that psychiatry was well above average. But we have to provide the treatment to those who really need and can benefit from it.
With all its well-recognized limitations, well done psychiatric diagnosis remains essential to effective psychiatric care. Diagnosis is reliable enough when it is targeted to real psychiatric disorders, is done by well-trained clinicians, and is not provided prematurely to provide a code for insurance reimbursement.
The single biggest cause of diagnostic inflation and unnecessary treatment is that eighty-percent of prescriptions for psychiatric drugs are written by primary care doctors who have insufficient training and too little time in their seven minute visits to be accurate — and when both doctor and patient are unduly influenced by saturation drug marketing.
So what is a patient or potential patient or parent to make of the confusing struggle between NIMH and DSM5 debacle?
My advice is to ignore it. Don’t lose faith in psychiatry, but don’t accept psychiatric diagnosis or treatment on faith — particularly if it is given after a brief visit with someone who barely knows you. Be informed. Ask lots of questions. Expect reasonable answers. If you don’t get them, seek second, third, even fourth opinions until you do.
A psychiatric diagnosis is a milestone in a person’s life. Done well, an accurate diagnosis is the beginning of increased self-understanding and a launch to effective treatment and a better future. Done poorly it can be a lingering disaster. Getting it right deserves the kind of care and patience exercised in choosing a spouse or a house.
Remember that psychiatry is neither all good nor all bad. Like most of medicine, it all depends on how well it is done.
The greatest doctor who ever lived was a very humble guy. Hippocrates is the father of medicine because he introduced the naturalistic conception of disease — you got sick because your organs weren’t working properly — no spirits, no curses, no angry gods.
But he also set a precious example of physicianly humility too often since forgotten. On a nearby Greek island, the doctors treated their patients aggressively — in ways that often did more harm than good. This led Hippocrates to formulate the most robust and enduring finding in all of medical history — the ‘rule of thirds’ states that one third of patients get better on their own; one third don’t respond to treatment; and just one third really benefit from it. This has been part of medical student lore for almost 2500 years and holds up remarkably well across time, specialties, and diseases.
It follows that the goal of medicine is to diagnose and treat only when there is a favorable risk/benefit ratio — to let people heal themselves when they can; to console those for whom there is no effective treatment; and to reserve risky treatments for those who need and can benefit from them.
It is, of course, difficult to predict course — and treatment response is often trial and error. But the obvious conclusion of Hippocrates’ teaching is to be humble about the doctor’s ability to treat and prevent illness. First and foremost — Do No Harm.
Dr. Diane O’Leary, an author and philosopher, believes physicianly humility is now in short supply. She writes:
Hippocrates’ sense of humility is valuable for all physicians — as a matter of principle and ethics, but also of simple number crunching.
There are roughly 30 million people in this country with rare diseases. That’s roughly 1 in 10 Americans asking their doctors for help with ailments likely to lead to diagnostic uncertainty. This is twice the number of people with cancer.
Since there are nearly 7000 rare diseases on current listings, it’s not humanly or statistically possible for doctors to be familiar with most of them. Without humility – without awareness that diagnostic knowledge is always limited – doctors can’t begin to care for the 1 in 10 people with rare disease.
Given these numbers it should not be easy for doctors to assume that symptoms they are unable to explain have psychiatric causes – but it is, in fact, easy. It is standard practice.
Because common diseases do also present in unusual ways, easy psychiatric explanations can be threatening not just for those with rare diseases, but for everyone. When doctors treat their inability to understand symptoms as evidence of patients’ psychiatric problems, lack of humility stands in the way of sound diagnostic reasoning.
Dr. O’Leary’s specific call for physician humility in the face of ‘unexplained’ medical problems’ touches on the broader need for humility in all aspects of medical and psychiatric treatment.
The poorly conceived DSM 5 Somatic Symptom Disorder substitutes a false psychiatric certainty that misleadingly covers medical uncertainty about the appropriate diagnosis. It is better to admit what we don’t know than cover it with meaningless labels.
Psychiatry needs to contain its recent enthusiasm for diagnosing as mental disorders all problems of life.
Researchers need to trim their exaggerated claims that we will soon solve the elusive mystery of how brain makes mind and behavior. The process of translating the exciting results of basic neuroscience into accurate diagnostic tests or improved treatments will be a very slow and lead up many blind alleys.
Doctors need to stop making snap diagnoses and starting premature treatments after first meetings with people they have just met and barely know. Watchful waiting beats intrusive diagnostic and treatment exuberance whenever the patient’s problems are mild and bearable.
Primary care doctors need to accept their limitations in delivering psychiatric treatment — it makes no sense for them to be prescribing 80% of psychiatric medicine. Not every patient has to leave the office with a pill.
And patients need to accept physician uncertainty and humility. Don’t push doctors for quick answers that will be wrong and harmful. Don’t you expect or ask for a pill for every problem. Trust to time, resilience, and support from family and friends to solve the expectable and transient problems of life.
Psychiatric diagnosis and treatment are often life changing events — usually for the better, sometimes for worse, sometimes a tie score. Sorting out who is who in the rule of thirds requires patience and humility — both currently in short supply.
The Obama administration proposes investing $235 million dollars into a new mental health program for our schools that is meant to increase the safety of our children and prevent future Newtowns. The money will train teachers and master’s level mental health professionals so that they may detect early signs of mental illness in their students.
This well-meaning program is a serious mistake for two reasons. First, it is no more than a politically correct, cosmetic solution that distracts attention from what really needs to be done. Second, it will likely wind up doing much more harm than good for the kids who are identified as being at risk for mental illness.
I really can't imagine the content of the training programs. There is nothing to teach — no proven way of detecting early signs of mental illness in children and no proven way of preventing it. Predicting violence is like picking a needle out of a haystack. The rarity of the event makes accurate identification simply impossible.
Most of the kids singled out (and stigmatized) by the early warning system will be 'false positives' — not really at risk for violence or mental illness and much better left alone to mature out of their problems. And most future mass murderers will be 'false negatives' — completely missed by the broadly cast net.
Attempts at prevention and early treatment are likely to increase the already rampant overuse of inappropriate medication in children. Many, if not most, of the kids identified will have no more than self-limited developmental or individual differences. But many will get unnecessary and potentially harmful treatment.
A large Canadian study showed that the best predictor of Attention Deficit Disorder in a boy is whether his birthday is in January or December (January 1 being the cut off date for school assignment). The horrible conclusion: we are medicalizing as mental disorder being young, being immature and being male. We should let boys be boys and not have our teachers play amateur psychologist.
The experience of prevention screening of young kids in New Zealand should be cautioning. Shortly after its initiation there was a dramatic increase in the diagnosis of Attention Deficit Disorder.
Early screening and preventive treatment are no longer the darlings of medical practice. Accumulating evidence makes clear how ineffective and harmful are almost all the highly touted screening tests. The best example: Screening for prostate cancer doesn't save lives, but does lead to invasive surgical and medical treatments.
Encouraging mental health screening for children is unsupported by scientific evidence and amounts to a reckless public health experiment on children.
Meanwhile, the misguided Obama program will divert attention from the two ways we really could improve school safety. The first is most obvious — guns kill kids and the more powerful the gun, the more kids who will be killed. We can't predict who the mass murderer will be, but we can predict that he will kill more people in proportion to the power of his weapon.
It is absurd to argue that private citizens have the right to own military style firearms and callous to ignore the great harms that have been inflicted by assault weapons in the past and will be inflicted by them in the future. Politicians must finally buck the NRA and do what is right for the kids (and the rest of us) — or else wonder why they didn't when future mass murders keep piling up.
Second, our mental health system is currently a mess and is rapidly getting much worse. Curing it won't end violence because the mentally ill are responsible for only a small percentage of violent crimes. But this is a good place to start and providing decent psychiatric services is necessary anyway if we are to become a humane and productive society.
As President Obama himself has pointed out, it makes no sense that the mentally ill now have much more easy access to guns than to proper treatment.
State budgets for mental health services (never robust) have been slashed in recent years so that it takes months to get a first outpatient appointment and it is almost impossible to be admitted to a hospital bed. Money should not be wasted on futile preventive programs to detect mental health problems that don't exist. Instead, resources should be invested where there is desperate need to properly treat and decently house psychiatric patients who are now shamefully neglected.
Psychiatric diagnosis is a serious business. Done well, it can significantly help a life, sometimes save it. Done carelessly, it can lead to disaster, even to premature death.
I have been witness to many thousands of patients who benefited greatly from psychiatric diagnosis and treatment. But I have also seen many hundreds who have been harmed by it.
When you lose a son, partly as the result of a premature and wrong diagnosis, it ignites in you a painful and prolonged search for answers. Suzanne Beachy shares her deep and heartfelt perspective.
Ms. Beachy writes:
I, along with a growing number of fed-up mental health consumers and family members, believe that disability and loss of hope can often be made worse by premature diagnosis that highlights weakness, ignores strengths, and predicts a dire prognosis based on meager evidence.
Jumping to a diagnosis of schizophrenia and starting long-term pharmaceutical treatments can turn a potentially temporary problem into a chronic one. In the not-too-distant past, a person reacting strangely to extreme distress was said to have a “nervous breakdown.” People who “broke down” were expected to become well again. Today, the diagnostic names are scarier and the prognosis is expected to be much grimmer — in a way that can become a self-fulfilling prophecy.
At age 21, my son Jake landed in the psych ward of a teaching hospital because he was having a “psychotic episode.” Although he had no prior history of mental problems, the psychiatrists immediately emphasized that he had a life-long and serious “mental disorder” with no hope of recovery. Among the staff, there seemed to be absolutely no interest in the possibility that his problem could be brief and temporary.
On only his second day on the psych ward, he was told that he probably had “schizophrenia.” The next day, his doctors were leaning toward a diagnosis of “bipolar disorder.” Why not the much less discouraging “brief reactive psychosis?” It was never even suggested as a possibility.
Jake was told that the stresses in his life (the potential loss of his home and his best friend, capped off by 9/11) would not bother a “normal” person. None of the clinicians expressed any willingness to help Jake reclaim his life. They were all laser focused on which chronic DSM diagnosis might best “fit” him so they could assign him to a long-term drug protocol.
In the hospital, a low dose of olanzapine [an antipsychotic used to treat schizophrenia and bipolar disorder] helped him to finally sleep at night (for the first time in weeks), and he was steadily improving. But that was not good enough for the white coats. They insisted on titrating the dosage immediately to the “therapeutic level” and adding lithium. Jake was told he needed these drugs like a diabetic needs insulin.
Alarmed by the staff’s refusal to engage in any sort of dialogue about the situation, Jake and I fought for his discharge (A.M.A), and he left the hospital with a diagnosis of “Psychosis, NOS.” His outpatient psychiatrist, aptly named Igor, told us that Jake’s brain was “just like a broken bone” and the drugs were “like a cast.”
Unlike a broken bone, though, Jake’s “broken brain” would need to be immobilized by the “cast” of medication for AT LEAST a year in order for his brain to heal. And even though the drugs almost completely incapacitated Jake, and he requested a reduced dosage, Igor refused.
A doctor friend of mine says that when a psychiatrist tells a young adult he/she has a life-long mental illness, hope crumbles. Being told that mental illness is like diabetes is misleading and discouraging. This is not a fair comparison.
Diabetes is due to a well understood defect in a body part, the pancreas. Mental illness, on the other hand, literally means that your mind is sick. Your mind, unlike your pancreas, is not just a body part. Your mind enables you to relate, set goals, dream, and have hope. If you and the people around you believe that your mind will be defective and sick for the rest of your life, you are left without hope of ever having the agency to build a life.
The pessimistic prediction of chronic disorder became a self-fulfilling prophecy for my son Jake. Being told he needed to “set more realistic goals for himself” presumably because of his “chronic mental illness,” Jake gave up on his goals and decided he might as well be homeless. And that’s the way he died in April of 2008, two weeks after his final birthday. (Happy Birthday, Jake).
What I have learned in the wake of Jake’s tragedy is that psychosis, mental breakdown, going bonkers — whatever you want to call it — need not be a self fulfilling prophecy of permanent illness.
We need not burden distressed young people with hope-sucking labels of chronic mental defect. There is a better way.
Thanks so much, Suzanne, for sharing with us your tragedy and your grief. Surely, your experience will be helpful to others faced with a similar dreadful situation.
Young people are particularly difficult to diagnose accurately. Their track record is so short, the future course is impossible to predict, developmental factors unpredictably affect the clinical picture and substance use is so common.
We should preserve uncertainty when it is the most accurate prediction of the future. The most common mistake in psychiatry is to prematurely jump to conclusions and to mislabel someone with an inaccurate diagnosis that has a terrible prognosis.
It is much safer to under-diagnose than to over-diagnose and much better to encourage realistic hope than to shoot from the hip with unrealistically gloomy predictions that can become self-fulfilling prophecies.
Diagnosis most often helps, but sometimes hurts. The loss suffered by Suzanne Beachy reminds us just how high are the stakes. We must be cautious, do everything possible to get it right, and first, last and always — do no harm.
Photo credit: Doni, Dustin, and AJ under the Creative Commons Attribution 3.0 license.
The 3-5 percent of kids who are particularly gifted are also at special risk for being tagged with an inappropriate diagnosis of mental disorder.
Marianne Kuzujanakis, MD, MPH is the perfect person to explain why. She is a pediatrician and a Director of SENG (Supporting Emotional Needs of the Gifted) — an organization dedicated to helping the gifted and their parents. She is also a co-founder of the SENG Misdiagnosis Initiative.
Dr. Kuzujanakis writes:
The 2010 American Academy of Pediatrics Task Force on Mental Health reported that 37% of children and adolescents either meet the DSM criteria for a mental health diagnosis or show some impairment in functioning. Diagnoses of ADHD and autism continue to rise.
Pediatric primary care physicians do much of the psychiatric diagnosis and prescribe most of the psychotropic medicine — but a recent survey showed that only 10% felt adequately prepared by their training to do so. They see kids for very brief visits and many are too influenced by drug marketing (as are parents and teachers). Over-diagnosis and over-treatment are commonplace.
Highly gifted children are a particular diagnostic challenge with errors that can occur both ways. When pediatric diagnoses are carelessly applied, gifted children are frequently mislabeled with ADHD, autistic, depressive, or bipolar disorders. Yet sometimes being gifted effectively hides these same conditions.
So, while some gifted kids are erroneously labeled and medicated for mental health disorders they do not have, others are unrecognized for learning or mental disorders they do have.
And many gifted children are never identified as gifted. Wasting much of their day in unsuitable classrooms, they may behave in unacceptable ways. Despite giftedness being akin to a special need, funding for it is scarce and the needs of gifted minority and poor children are shamefully overlooked. Very few articles are found in the pediatric medical literature about giftedness.
Teachers and physicians also receive minimal instruction on the identification and management of gifted children and the fact that they seem to be wired differently and have developmental trajectories that differ from the norm. Many gifted kids experience the world with heightened and vivid intensities and sensitivities that may be a big plus (allowing them to become creative artists, scientists, inventors, and humanitarians) but also can be a big minus (subjecting them to sometimes overwhelming emotions and worrisome and unacceptable behaviors.)
Normal giftedness can easily be confused with DSM mental disorder. Gifted kids may talk a lot, have high levels of energy, and be impulsive or inattentive or distractible in some settings — similar to symptoms of ADHD. It’s not unusual for gifted kids to struggle socially, have meltdowns over minor issues, or have unusual all-consuming interests — all pointing to an inappropriate diagnosis of autism. Often perfectionistic, the gifted are more likely to be introverted and may feel alone and alien in a world that doesn’t fully understand them.
Giftedness is not always seen as a socially positive and valued trait. Many gifted kids are bullied, others underachieve to hide their abilities, and some experience anxiety and depression with increased risk for self-harm. As many as 20% may drop out of school.
Here is some advice to parents, teachers, and medical professionals:
Throw away pre-conceptions of what giftedness should look like or where giftedness is found. Giftedness is not always equivalent to high academic achievement, and isn’t limited to race, ethnicity, gender, or affluence. Gifted kids do sometimes have learning or mental health disorders.
Throw away the idea that normal must be defined by a narrow set of criteria. Not everyone processes information and sensory inputs in the same way, nor does everyone develop along the same expected timeline. Variability does not automatically indicate a disorder. Be insistent that both weaknesses and strengths are equally acknowledged and supported.
It is important to determine who is suffering with an observed behavioral issue — the child or those around him/her. Labels, treatments, and medications are meant to alleviate suffering in the recipients, not as a means to make those around them happy.
It’s OK to not have all the answers. Take the initiative to find out more about giftedness and gifted misdiagnosis. Here [ http://www.sengifted.org/resources/resource-library/recommended-reading ] are some valuable resources.
Seek out organizations like SENG, National Association for Gifted Children (NAGC), Davidson Institute, CEC-TAG, Uniquely Gifted, World Council on Gifted, Hoagies Gifted, and your state gifted associations for opportunities to learn more.
Thanks so much, Dr. Kuzujanakis. One of the disasters of the diagnostic inflation is that expectable and desirable individual difference is so often mislabeled as mental disorder.
Caution is particularly necessary in diagnosing kids. They are so developmentally labile and have such a short track record that diagnostic mistakes are frequently made and once made are extremely difficult to undo.
The public revulsion over repeated mass shootings has placed mental health in the spotlight. This is both good and bad.
Bad because focusing on the mentality of the shooter diverts attention away from the lethality of the weapon — and from the fact that many mass shooters had no history of mental health involvement. We will never be able to predict who will commit random acts of violence, but we can reduce our ridiculously high rates of gun death by having a sane gun control policy.
Good because our current (non)system of mental health care is badly broken and cries out for fixing and better funding. The problems are spelled out by Amanda Pustilnik, associate professor of law at University of Maryland and an expert on the relationship of law, neuroscience, and mental health policy.
She writes:
Today, our largest mental hospitals are our jails. The jail at New York’s Rikers’ Island functions as the nation’s largest psychiatric facility. Los Angeles’ jails — not its hospitals — are California’s largest providers of mental health care. State prisons alone spend nearly $5 billion annually to incarcerate mentally ill inmates who are not violent.
According to the Department of Justice, nearly 1.3 million people with mental illness are incarcerated in state and federal jails and prisons — compared to only about 70,000 people being served in psychiatric hospitals.
The current psychiatric hospital inpatient population is only 5% of what it was at its height. We have about the same number of psychiatric hospital beds now as we did in 1850. Some of this 'deinstitutionalization' comes from the availability of medication and improved outpatient treatment, but most of the change is no more than a switch of institutions from hospital to prison.
Every year, tens of thousands of people try in vain to get access to mental health treatment. It can take months just to get an outpatient appointment and people desperately in need are routinely turned away at the hospital door because there is so little funding for psychiatric beds.
Where has the money for treatment gone? Much of it has been funneled directly into, and wasted on, our prison system. Prisons and jails have taken on behemoth proportions, bloated with nonviolent and even non-offending people who in earlier times would have been treated in hospitals — we are the poorer for it and no safer.
The mentally [ill] are far more likely to be the victim of a crime or to harm themselves. Their over-representation in the criminal system results from their poor ability to communicate with police, lack of adequate legal representation, self-medication with drugs and alcohol, enacting symptoms in public, and lack of any other place to put them. As a Florida judge pointed out — jails are the one institution that can’t say no to admitting someone — so the mentally ill are dumped there, often without treatment, and then have a criminal record to boot.
And some mentally ill people spend time in jails without having committed any offense at all. Several states authorize the police to arrest mentally ill people who have not broken any law, simply to promote public order. More commonly, hospitals transfer patients to jails to handle overflow. Even children may be confined in criminal detention centers because there are so few treatment facilities for severely mentally ill children. This reliance on the criminal justice system as a surrogate mental health system wastes life and treasure and conflicts with basic notions of justice.
So, why are we so irrational in our misallocation of resources? Why don’t we invest instead in proven alternatives to prison, like assertive community-based treatment programs and access to supportive housing?
The problem is that housing and treatment sound like 'entitlements' — while prison sounds like (and is) punishment. As a culture that prizes self-reliance, we are cautious about extending benefits and suspicious of rewarding people for what looks like bad behavior. The punishment of people with mental illnesses who act out in public might also seem to fit with a certain notion of public order and personal responsibility.
And it fits with our fears: We look at a handful of national tragedies and conclude that mentally ill people are irresponsible and dangerous — that a law-and-order response is appropriate and necessary. With visions of school shooters before our eyes, we don’t see the typical mentally ill person — someone who is mostly likely to be poor, female, and non-violent.
According to the Bureau of Justice Statistics, three out of four women in state prisons have a mental health problem, compared to just over half of male prisoners. Yet women are not driving the mass violence problem in our country.
Our current moment is reminiscent of 1998, when New York State Governor George Pataki responded to the tragedy of a schizophrenic man pushing a woman to her death in front of a subway train. ‘What can we as a people,’ the governor asked, ‘do to protect individuals from themselves and to protect us as a society?'
It’s time to turn that question around and ask how we can protect mentally ill people from our dangerous preference for punishment over treatment, for prisons over hospitals, for cleaning up tragedies rather than preventing them.
Let’s provide effective treatment for people with mental illnesses, not make them the stalking horse of our fears. If we focus on access to treatment instead of punishment, we may all be safer and live in a better society.
Thank you, Professor Pustilnik, for a compelling presentation of a national nightmare. "A society will be judged on the basis of how it treats its weakest members." We are failing that judgment in the most shameful and costly way possible.
To reduce gun violence, we must have saner gun control policies AND saner care of the mentally ill. These are not competing alternatives — they are both desperately needed.
My fear is that we will get neither. As Mark Twain said, "History doesn't repeat itself, but it sure does rhyme."
The rhyme here is political inaction. After each tragedy, the politicians hypocritically mourn and harrumph, but wind up buckling under pressure from the NRA, fiscal constraints, and the prison and gun lobbies.
We now have the best chance in decades of breaking out of the all too familiar past patterns, but the smart money is that the politicians will once again take no, or only symbolic, actions and that we will continue the insane military arming of the civilian population and the cruel shunting of the mentally ill to jail. If mass incarceration of the mentally ill could solve mass gun violence, we’d be safe already. But we aren’t.
It seems that only the constant toll of repeated dramatic tragedies will eventually shake the complacency and cowardice of a stalemated Congress and the backward looking state legislatures.
The bad news is that it takes recurring tragedy to restore interest in a sane gun control policy. The worse news is that any meaningful legislative relief remains very much a long shot. Hypocritical politicians are likely to do nothing at all or find cosmetic excuses to avoid the hard choices necessary to protect us and our kids from this epidemic of avoidable violence.
Perhaps the easiest way out for the politically timid will be to limit themselves to gun control for the mentally ill. This is long overdue, but won't help much and doesn't go nearly far enough — kind of like applying a band-aid to the gaping wound inflicted by an expanding, high impact bullet.
We must go much further. No civilian — mentally ill or not — ever needs or deserves access to a military style assault weapon that is capable of killing dozens of people in a few short minutes. The pleasure that some gun enthusiasts seem to take in owning and firing these weapons is not an inalienable constitutional right deserving second amendment protection.
I challenge even hunt-happy Justice Scalia to make the case that the constitution requires allowing the de facto militarization of one portion of our civilian population when doing so presents such a clear and present danger to the rest. We have successfully outlawed these ridiculously powerful weapons in the past and must now do so again.
There are five reasons why targeting only the mentally ill will have little effect in preventing homicides:
1. While they are somewhat more prone to violence than the general population, the mentally ill account for only a small percentage of homicides.
2. It is impossible to predict in advance who is likely to become violent and when.
3. The mentally ill most likely to commit violence often avoid mental heath contact and likely won't leave a computer trail to alert authorities.
4. It is impossible to guarantee security once the gun is sold. The Newtown killer used weapons purchased legally by his mother. If enough assault weapons find their way into American households, some will inevitably wind up in the wrong hands and repeated mass murders will be the unhappy result.
5. The boundary between mental illness and normality is fuzzy and arbitrary, providing no practical way for deciding how much restriction should be applied to whom.
The biggest benefit of better gun control for the mentally ill would be a reduction in firearm suicide, not homicide. This is beneficial, but not enough.
Gun control advocacy groups have previously endorsed efforts that targeted the mentally ill on the theory that this was all that could be accomplished given the political climate and that some gun control was better than none. This was reasonable then, far too unambitious now.
The goal now should be to restrict everyone's access to military grade weapons and also to regulate gun show distribution channels.
The NRA is stubbornly doubling down — making the ludicrous suggestion that we continue to allow wide access to military grade offensive weapons, but establish a defensive perimeter around and within our schools to protect against them. The radical ideologues who control the NRA would encourage a continuing arms race that will result in even more murder, mayhem, and shootouts. This is the path of madness.
Politicians, now is the time to declare your fealty. Do you care more about the safety of kids or the campaign contributions of the NRA. Our country must not continue to be held hostage to this deadly plague.
President Obama will soon declare a second 'decade of the brain.' The multibillion-dollar project, to be run by the Office of Science and Technology, hopes to map the human brain as successfully as the Human Genome Project mapped our DNA code. The considerable resources of the National Institutes of Health, the Defense Department, and the National Science Foundation will be coordinated with universities and private foundations.
The idea is to join the techniques of neuroscience and nanoscience to figure out what causes illness and what creates human consciousness. The scientists involved in project planning are breathlessly excited that this might lead to a paradigm shift. Perhaps we will gain precious insights into Alzheimer’s, autism, schizophrenia, and bipolar disorder. And perhaps we will even understand what makes us most human — how the brain makes mind.
The project is a good idea, but don't hold your breath that it will lead to any quick clinical breakthroughs or deep insights into human consciousness. We have been down this path before and the clearest lesson is that the brain reveals its secrets reluctantly and in very small packets. The second clearest lesson is the great difficulty translating fantastic basic science into practical gains in clinical diagnosis and care.
The human brain is by far the most complicated thing in the known universe. Its 100 billion neurons each connect to 1000 other neurons and they signal each other constantly through the mediation of dozens of augmenting or inhibiting neurotransmitters. The miracle is not that things sometimes go wrong, but rather that they so often go right.
There won't be one cause of what we now call schizophrenia or autism- more likely there will be hundreds of different pathways. In figuring all this out, there will be no walks and no home runs- just occasional singles and many strikeouts. This is not wholesale work that can be achieved in any one 'decade of the brain'; it will be the slow, steady retail slog of many generations of scientists.
We have been down this route many times before. The National Institute of Mental Health designated the 1990s as the Decade of the Brain and much good neuroscience was done. But generally the brain was very selfish in revealing itself and the results failed to live up to expectations.
The neuroscience of the late nineteenth century was similarly brilliant and similarly oversold as being on the cusp of the kind of fundamental understanding that still eludes us — and will for some time.
If you had to bet between the brain's capacity to hold secrets and our capacity to discover them, the smart short-term money should always go on the brain.
That doesn't mean that President Obama's project isn't a great idea. Even if we don't quickly unlock the mysteries of schizophrenia or consciousness, every little step forward helps. And likely there will be unanticipated gains, particularly in artificial intelligence and brain prosthetics.
Certainly spending money on brain research beats buying yet another aircraft carrier, or continuing tax breaks for oil companies, or perpetuating the monopoly pricing that allows drug companies to rip off billions every year from the government and consumers.
Just don't expect more than our current tools can deliver. The Human Genome project is one of man's grandest scientific achievements — but it has had a fairly minimal impact on our nation's health — much less, for instance, than the reduction in smoking that has occurred simultaneously.
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