“What caused my son to get sick?” I asked.
The doctor said he didn’t know.
“Will it happen again?
The doctor said he didn’t know. It could happen or it might not.
“Do you know what is wrong with him?”
The doctor said he wasn’t certain.
Welcome to the imprecise world of psychiatry.
On May 22, the American Psychiatric Association will release its new Diagnostic and Statistical Manual of Mental Disorders, the so-called Psychiatrists’ Bible, that is used in making a mental health diagnosis. From the moment the APA announced it was revising its DSM, the new edition has come under attack. Most of these early criticisms have been predictable and not especially startling — until April 29th.
That is when Dr. Thomas Insel, the director of the National Institute of Mental Health and a doctor whom I personally admire, published a “director’s blog” that dropped the equivalent of a nuclear bomb into the DSM debate.
Dr. Insel wrote:
While DSM has been described as a “bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability” — each edition has ensured that clinicians use the same terms in the same ways. The weakness 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…Symptom-based diagnosis, once common in other areas of medicine, has been largely replaced in the past half century as we have understood that symptoms alone rarely indicate the best choice of treatment. Patients with mental disorders deserve better…”
Continuing, Dr. Insel explained that NIMH has launched the Research Domain Criteria (RDoC) project “to transform diagnosis by incorporating genetics, imaging, cognitive science, and other levels of information to lay the foundation for a new classification system” to replace the DSM.
If you cut through the scientific wordage in Dr. Insel’s blog, what he is saying is that the NIMH has decided it will no longer be “constrained” by the DSM’s traditional categories. Translate: it’s not going to pay attention to them. The NIMH has decided that mental disorders are “biological disorders that involve brain circuits.” As such, the NIMH is going to spend its research dollars on projects that do brain “mapping” to identify “the cognitive, circuit, and genetic aspects of mental disorders” to determine how best to treat them.
Dr. Insel added that the NIMH will be doing this largely from scratch (my words, not his) because it simply doesn’t have enough useful data to understand what is going on in the brain. It has no objective laboratory measures, like blood counts or other biological markers.
What does this mean?
From now on, NIMH research will be based on emerging research rather than on symptom based research. For instance, instead of conducting tests of groups of pre-screened persons who have been diagnosed with bipolar disorder, NIMH will pay researchers to study all patients in a mood clinic and then look for biological markers that might explain why an individual is experiencing rapid cycling moods regardless of whether that individual has been diagnosed with schizophrenia, bipolar disorder, or depression.
Dr. Insel’s conclusions that mental disorders are biological disorders involving brain circuits and that the DSM’s categories need to be put aside in research, set off a firestorm. The APA psychiatrists working on the revised DSM defended their work. Anti-psychiatry groups cited Dr. Insel’s statements as evidence that psychiatry is nothing more than a bunch of psychiatrists — aided by Big Pharma — sitting around deciding that people who act differently from others have a mental disease and need a pill to fix it. Without a blood test, there is no evidence a problem exists. The New York Times concluded in an editorial that although it is flawed, the DSM “remains the best tool to guide clinicians on mental disorders.”
As for me, I found Dr. Insel’s blog refreshingly frank but also frustrating.
At various times, I have been told that my son has bipolar disorder, schizo-affective disorder, even early onset schizophrenia. The last diagnosis was bipolar disorder with psychotic features. All of those diagnoses have been frightening to a father. All have been given by well-intentioned doctors evaluating my son based on his symptoms, actions, and what kind of medication seemed to help him. None of the doctors could tell us what actually prompted the symptoms to surface, whether they would return or what was the underlining reason for them.
Because there were no warning signs before my son became psychotic in his early twenties, I have always felt that his symptoms were the result of a biological malfunction that probably was genetically based. Because of this, I welcome Dr. Insel’s focus on biological and genetic links.
As I have traveled the country, I have met individuals whose mental distress has been caused by their environment, such as Post Traumatic Stress Disorder in returning war veterans. These do not seem to be biological or genetically based. Are they?
How does a doctor tell the difference between a trauma based illness, a biologically based illness, behavior that might be both biologically and environmentally based, and/or an individual’s personality quirks?
Dr. Insel believes emerging technology and scientific skills will help us finally begin answering these questions. I hope he is correct. I find it frustrating that we know so little about our brains. It is discouraging that we have such little data on biomarkers and cognitive performance. There have been many false starts when it comes to psychiatry. Where will this road lead us in trying to understand the most complicated of our body parts?
As a layman with no scientific expertise, I believe Dr. Insel is leading NIMH in the right direction. I hope that during my lifetime, we finally can identify the causes of schizophrenia, major depression and bipolar disorder. I pray we will not only find ways to better control symptoms — without debilitating side affects — but also cure severe mental disorders.
But I also wonder if neuroscience alone will be able to pinpoint the root of aberrant behaviors. At some point, personality and judgment enter into our actions and while science might be able to identify breakdowns in brain circuitry and tell us how to fix them, I’m not certain if we will ever understand what causes one individual to see a glass half-empty and another to see it half- full.
I welcome your thoughts.
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One point: As you say, disorders such as PSTD are not purely biological/genetic (you have to have the environmental/experiential trigger). However, there is a significant body of research that suggests that the susceptibility to trauma, that is the risk that a traumatic exposure will lead to long term symptoms, likely is. Certainly, the symptoms that a person experiences when they have PTSD are biologically based. Obviously, more research is needed, but be careful when we say that there are “trauma based illnesses” implying that the symptoms and suffering these patients experience are not rooted in biological/physiological changes. Just as physical trauma can cause lingering physiological changes that impair people for years after the traumatic event and require treatment, so too can psychological trauma leave scars on the brain. PTSD, at least once these changes have begun, is no less “biological” than other psychiatric disorders. To imply that it is risks marginalizing the patients that suffer from it, even within the already marginalized world of mental illness. Since I am sure that this is not your goal, I suggest that you be slightly more careful with your language.
I was so pleased to see this well written response, because now I don’t have to say it. Thank you very much.
There is quite a bit of evidence that suggests that “mood disorders” have biological origin, and can be “triggered” by trauma. Are they brain disorders? This would suggest they could be
Thought disorders, on the other hand, seem to fit cleaner into the category of brain disorders. If your mind is betraying you (as opposed to your emotions), you’d think we could see that on an MRI or CAT scan or some other type of test, wouldn’t you?
When you have kids that have both, like I do and you do, it makes me wonder – could they REALLY have co-occurring thought AND mood disorder, or are they really both biological in nature? I mean, what are the odds of having something that is a brain disorder and something else that is similar but isn’t?
I am very encouraged that the NIMH wants to do more research into the brain and mapping to determine how mental illnesses can be detected and diagnosed, and, eventually, treated and prevented. I’ve often felt the DSM was nothing more than a big book of insurance billing codes.
Oy, so from a psychiatrist’s viewpoint, they are all just words and none of them do a good job of either explaining or categorizing what we do and don’t know. The DSM revision is an attempt to take what we’ve learned about how symptoms cluster as illnesses (for the sake of names, for research validity, minimally for treatment, and for a variety of political reasons) and do a better job of classifying them according to a scheme that makes sense. The NIMH declaration that DSM does a lousy job of getting everyone into the right box (if they need to be ‘boxed’ at all!) and that diagnosis based on etiology and known pathology would be better– well, of course, but it’s hardly news, and it’s not like researchers haven’t been looking to understand the biological/genetic/anatomic/chemical causes and correlates of mental disorders — it’s just been surprisingly unsuccessful. Will Dr. Insel’s declaration that the current means of naming is inadequate make it happen quicker?
Maybe the shocking thing is that even without understanding what causes psychiatric problems, we’re still often able to help people. And sometimes, horribly sick people get all better. Yes, there is so much space to learn more about about what causes these illnesses, why some people get PTSD when exposed to a stress while others don’t when exposed to much greater stresses, why one brain gets sick or responds to a treatment when another brain doesn’t.
The name of the illness? Maybe the least of our problems. To the clinician, it’s a number to stick on a form and the new DSM will have minimal impact.
I am encouraged by the 3 (here), intelligent and thoughtfully written blogs..in this world of ‘who you know’, becoming increasingly more important than ‘what you know’, for the mentally ill, it is good news that more than a few in ‘high places’ are feeling free-er to speak publicly on the ‘hidden truths’ of mental illness, disorders, thought aberrations, whatever…
In the early 1970’s I was interviewed and studied by researchers, clinicians, doctors, and data gatherers,( with my permission granted),
while a patient in medical university teaching hospitals. Inquiries into family history and genetics were made to my family, as well, and a host of biological tests – brain scans, bloodwork, vision, hearing, cardiovascular, enteric, hormonal, and a grand battery of psychological testing was carried out on me. The effects for me were twofold:
I was made to feel pretty damn important.
Hope became mine. Scientific brain tanks were taking an interest in understanding, treating, and curing the ‘yet unknowns’ that were causing the worst thing that had happened to me in my fifteen years –
the sudden frighteneing loss of my sanity. Never again would I take for granted the ability to think clearly, trust my emotions, use rationale and good judgement.
Life, in all its fullness, is simply not possible without one’s faculties intact.
Since 1970, breakthroughs have been made in AIDS, cancer, organ and limb transplants, disturbing luxury treatments for fertility, sexual,and cosmetic complaints. Non-life threatening conditions like hearburn, dry skin, menstrual cramps, and acne have been over- researched. Is there anything less noble for humans to research than the understanding of their own brains? Is there a really good reason why its not a priority for all who love and respect life?
As I carefully cooperated with scientific research, I naively envisioned a cure, or at least some answers on how to live productively with a condition that promised to sabotage every area of my life.
So – decades later – there is renewed interest?
All the while, I thought I was helping myself and humanity, participating in hours of useful research…
Yes to the biology, the uncharted brain curcuitry,the undocumented human and environmental interactions imposed on all humans from conception on…
Yes to genetic factors, personality and temperament, yes to spirituality and the constant flow of electically charged particles in and around our physical bodies. Yes of course to chemicals, nutrients, the passage of time, thoughts as precursers to action, yes to the reality that all illnesses/conditions/ disorders, regardless of catergorization, are whole body/ whole self manifestations.
All systems in the human organism work together. There is no separate heart, brain, kidney ‘malfunction’, without the entire system with its massive intricacy, being involved, affected, and very much a player in the whole health of the body. This is fact.
Tell me – that my role as a research guinea pig, so many years ago, as a teenager in pain, was not in vain.
Pete: Is there a way we (families) could “volunteer” for any studies on bi-polar and schizophrenia? Especially those who had “late” or “later” onset (late 30’s & 40’s) with regular lives before mental illness hit…
Dr.Insels neuroscience approach is very promising because his research will provide clues and then answers to why some people are predisposed to brain diseases while others move through life unscathed. I want my loved one to find medications that stop the illness in its tracks. My concern is will there be money available for brain research like there is for heart and cancer research.
Terri
The NIMH has decided that mental disorders are “biological disorders that involve brain circuits.”
what??! and who are they to decide what is what…? I remember Freud in the late´s 1890, when he practised neuropsychiatry in Viena and understood that brain couldn´t entirely explain the behaviour and sympthoms of his pacients. Where is the affection? his history? his or her enviroment? the theory of attach in the early moments of the newborn??
I don´t know if in United States disknowledge all of this..?! is like turning backwards! i think meanwhile this agrupations like NIMH or APA don´t try to understand the human being in a complex way, we will not find any answer in a integral dimension. I recomend Complexity Paradigm of Edgar Morin. An author that explain very well how you can “understand the world” without have a shortside view and chopped reality..!
Greetings from an Uruguayan psycologist.
I read your article this morning in USA TODAY and had to join in on your site to tell my story. I have a son (21) who had his 1st psychotic break in Nov 2012 and was later admitted into the hospital to be stablized. This was a total shock to us as we do not have any known trace of assumed bi-polar or schizophrenia in either mine or my husband’s families. My son was released after 6 days and continued to improve but under the influence of his meds. We’re held hostage to the notion that meds is the only way for now as I have hope for the closing gap between mental illness and neurology. A few months later, my son was again admitted to the hospital because he was not taking his proper doses if at all. He had gotten a job and that’s when it ironically went downhill. There is an element to his situation that many of you have not mentioned – drugs. As we all know kids are going to try them…achohol , marijuana & synthetic marijuana (K2, spice, and Kush). There are more and more signs of dangers with these drugs in particular -the synthetic marijuana. My son admitted to using Kush occasionally . Of course there are a whole slew of other types of drugs that can alter the brain as well….opiates, benzoipines etc.
We are going to have an MRI on our son. He now is in a facility that ensures him taking his meds, 3 meals a day and lessons on life skills etc. Needless to say it’s very expensive. Reason he’s there is because his “paranoia” demands he not stay at home. The drs are proposing a tentative diagnosis called “plausible delusions”. They say is tricky to fix as the delusions can be based on real things. They’re ot fantasies etc…. Being that we do not have a known gene for mental illness, this either is a mutation of some sort from previous generations or a physiological cause (of which I’m hoping) from something as concrete as drugs. The drs will be looking for lesions from a possible sezure . These can be treated with medication for a Cure.