Dear Members,

An important proposal that will affect the diagnosis of juvenile bipolar disorder for the next decade has just been released by the American Psychiatric Association (APA). It is part of the planned revision of the Diagnostic and Statistical Manual for Mental Disorders, commonly referred to as the DSM. The DSM contains the information upon which professionals assign their psychiatric diagnoses. It cannot be overstated how important and influential this manual is in YOUR life. It is the book by which clinicians and doctors are trained, insurance is reimbursed, school accommodations are approved, legislation is passed, justice is executed, and research is guided.

On February 10^th, the proposed revisions were made public and covered extensively by the media. You can find the proposed draft on the American Psychiatric Association website: www.DSM5.org.

Why should you be concerned? Because one of the recommended changes includes a new diagnostic classification that may prevent children who need treatment consistent with a bipolar diagnosis from receiving it.

The new diagnosis is called Temper Dysregulation Disorder with Dysphoria (TDD). It describes children who have recurrent temper outbursts that are disproportionate to the situation and are otherwise characterized by a persistently negative or chronically irritable mood. The research that led to the TDD classification explored whether or not children who experience chronic irritability are actually bipolar. This focus was in response to the alarming increase in rates of children who receive a bipolar diagnosis, many of whom present with chronic irritability rather than clear, episodic mania or hypomania: the hallmark feature of a bipolar diagnosis. The researchers claim to have identified validators that indicate that, in contrast to children who do experience clear episodes of mania or hypomania, children with chronic irritability are not bipolar.

These children, researchers believe, are on a life-time path that, like oppositional defiant disorder, is likely to move into unipolar depression and/or anxiety disorder, rather than into bipolar disorder. In this view, first line treatment would consist of SSRI’s, stimulants and behavioral modification therapies without the concurrent use of mood stabilizers or antipsychotics. The trouble with this is that, for a child who is indeed bipolar but erroneously diagnosed as TDD, this treatment approach could lead to dire consequences and exacerbate the illness.

We believe that the assumptions that have led to the TDD classification repeat the same fundamental flaws that have held back psychiatric research for the last decade. Disorders continue to be conceptualized with clear boundaries between them and thresholds within them. They derive from observation and are finalized by debate and consensus rather than evidence. This creates a diagnostic system that is as fragile as the next good idea and merely continues to redraw the lines; in this case it is between chronic irritability and episodic mania.

But without evidence-based research we are not getting any closer to understanding the underlying biology that leads to mental illness. In fact, it is now known that the manner in which current, categorical diagnoses are separated DOES NOT correspond with the underlying neurocircuits that connect our brains to our behavior. This misalignment will prevent us from seeing cause and effect clearly and way-lay targeted, effective treatments.

We are confident that research conducted by the investigators in our scientific consortium offers a departure from the status quo. It is part of a new era ushered in by progress in neuroimaging, neuroscience and genetics. Its dimensional approach is highly consistent with the new research agenda embraced at the National Institute of Mental (NIMH). Using data generated by the world’s largest clinical database on children with a community diagnosis of bipolar disorder, the Juvenile Bipolar Research Foundation has supported studies aimed at the identification of the biological basis of the illness. By including a comprehensive symptom profile in the investigation of these children, rather than the delimited criteria from the DSM, researchers have now identified a specific constellation of symptoms that define the most severe form of the disorder in children. This knowledge has already led to a better understanding of the basic biological underpinnings of the illness, and is in turn, suggesting new avenues of treatment. For more information about the research, please read the web posting: http://www.jbrf.org/juv_bipolar/fohphenotype.html.

Unlike our comprehensive approach, the current narrow focus on mania that led to the TDD classification did not consider symptoms such as psychosis, parasomnias, carbohydrate craving and obsessive behaviors—symptoms that we believe are central and inseparable to the condition and that were crucial to the development of a neuroanatomical model of the illness. It is this narrow focus that may lead to the sorting out and erroneous diagnosis of children as TDD and prescribe a path of treatment that is threatening to their illness.

Given all this uncertainty, it's important to treat this proposal for inclusion of TDD in the next DSM as just that...a proposal. We are already aware of people allowing the proposal of the TDD diagnosis to influence their illness management decisions. While it may very well end up in the DSM-5, it is not there yet. We don’t think that you should be overly concerned that your child has been misdiagnosed. The underlying flaws of this diagnostic system as a whole mean that misdiagnosis and hit-or-miss medication trials are ever-present possibilities. So you don’t need to jump to action just because another category has been proposed. If your child is doing well, it is probably worth staying the course. If your child is not doing well, it is probably worth continuing to look for alternative explanations and treatments.

If the TDD diagnosis does end up in the DSM, we fear that there may be considerable allure to the diagnosis. The fact that it is being presented as a correction diagnosis will make many people question their current diagnostic status. This is not necessarily a bad thing and in some cases a change might be warranted. However, we are concerned that some changes may come because, as a diagnosis, TDD may seem “preferable” to JBD. For instance, a child with TDD would not face a life-long sentence of medication that a child with JBD incurs. Further, TDD seems unlikely to engender the same degree of stigma that accompanies a bipolar diagnosis. Given the lack of clarity and guidance, ongoing confusion and controversy, and characterization of severe impairment that comes with a bipolar diagnosis, there will likely be pressure from families and clinicians to elect this new option despite the lack of evidence of a better treatment outcome.

To successfully treat neurological conditions such as bipolar disorder, we need evidence-based, biologically anchored diagnoses that will lead to effective identification, research and treatment, not debated ideas or preferences. The field is not ready to provide this type of diagnostic improvement across the board. But we think the JBRF-sponsored research offers a starting place.

We are working hard to bring the research to the attention of the leadership at the DSM. However, despite the fact that it is in line with research priorities at NIMH, and even with members throughout the DSM Task Force, it is also clearly at odds with the type of research and perspective that is embedded in the DSM and still embraced by many clinicians and clinical researchers. Integrating it will be fraught with far-reaching logistical, practical and cultural difficulties. But inconvenience should not stand in the way of real help.

Between now and April 20th, the DSM Task Force has opened the revision process to public review and comment. We urge you to advocate on behalf of your child. Demand that they provide a diagnostic category that more specifically defines this complex and devastating condition. Share with them your thoughts, experiences and needs. They have said that they will read EVERY submission. You can send your comments to the Task Force via: http://www.dsm5.org/Pages/Registration.aspx.