Saturday, November 7, 2009

Treat the Whole

By now, most people have probably read about the proposed change to the psychiatric DSM (Diagnostic and Statistical Manual) whereby the diagnostic labels for Asperger’s syndrome and pervasive developmental disorder not otherwise specified (PDD-nos) will be eliminated, and enfolded into the broad diagnostic label of autism spectrum disorder. Here is an article about it in the New York Times: A Powerful Identity, a Vanishing Diagnosis.

But the pros and cons of that proposal is not what my writing is about today. I am more interested in the MEDICAL-oriented updates to be included in the new DSM-V, which is due to be published in 2012, replacing the current DSM-IV.

The authors are catching on to something the parents have been screaming for years – just because there is a label for the set of symptoms in that manual, does not mean it is not medical, and as much of the medical as possible needs to be treated.

Apparently, a broad change in the DSM-V is the recognition that patients with disorders affecting the brain – referred to as psychiatric disorders – often have a kaleidoscope of health problems affecting mind and body. If the new DSM-V starts getting taught in the schools, it will be encouraging doctors to evaluate and treat the WHOLE patient. Hmmm… Let’s see… the book will be published in 3 years. Then it will take another 8 years for the new psychiatrists to be trained and in practice… hey!! Just eleven more years until we have newly emerging doctors of psychiatry who are trained to be real DOCTORS and treat psychiatric patients as people who may not have an emotional or personality problem, but a slew of complex medical issues, each of which need to be addressed.

The New York Times article says the change for autism spectrum disorder will likely include in the array of health issues commonly accompanying the disorder: seizures, gastrointestinal problems, anxiety, attention disorders, and sensory differences like extreme sensitivity to noise.

The only questions I have about this is then… will the psychiatrists be trained to address the endocrinological, autoimmune, allergy-related, gastrointestinal, dietary, and neurological problems that comprise the illnesses in this “psychiatric” manual? Why have them in a psychiatric manual at all? Why not just have them listed as medical issues for which is needed a collaborative team approach addressing the WHOLE patient – a dietician, integrative medical specialist, gastroenterologist, allergist, neurologist, endocrinologist, and therapists as needed for speech, sensory, behavior and processing issues.

And if, then, we treat our children as they should be treated – with this team of medical specialists –which one will be the “conductor” of the medical symphony? Will the psychiatrist take on that role? Currently, my children’s psychiatrist certainly did not. We found a GP who was willing to put in the time and effort to do so – to communicate and sometimes even teleconference with all the other doctors on our cobbled-together team. He is the central repository of updated medical records, summarizing as necessary so we could have information from him to take to the other doctors (many doctors accept the same data coming from another physician better than us typing it up ourselves). However, the GP worked the psychiatrist right out of a job. We suddenly realized – hey – the GP really was doing what was necessary. There was no role left for the psychiatrist on the team, and so he was phased out entirely.

It is an entire shift in how we view and treat these children that is needed. And they don’t have eleven more years for society and the newly trained psychiatrists to BEGIN thinking about a better way to treat the WHOLE of the child, rather than a narrow PIECE of the child.

Our only option now is to insist on the proper care, NOW. Be relentless. Gather together a team of doctors who will help. Use word of mouth. Use every resource available. Keep learning. Keep up the fight.


On a completely different tangent, I leave you with a thought to ponder about the proposed changes – This part. . .
The proposed changes to the autism category are part of a bigger overhaul that will largely replace the old “you have it or you don’t” model of mental illness with a more modern view — that psychiatric disorders should be seen as a continuum, with many degrees of severity.
. . .
Isn’t all human behavior, human health, human personality, all a part of a continuum? In the past, a disorder was not considered a disorder unless it adversely affected function or the quality of either the person’s life or the lives of those around him/her. With the new definitions, might not all of us fall on virtually every continuum diagnostic category, since all that is abnormal derives from the normal. It is the degree of distance from the center which labeled it as a disorder. I for one, would like to keep that distance.

Will the child who prefers order and cleanliness, who in the past might grow up to be a brilliant meticulous, “OCD-ish” surgeon, now be labeled on the continuum of OCD (obsessive Compulsive Disorder) and put into therapy to better conform with the messiness and chaos considered closer to “normal”?

Perhaps including the medical issues is a step in the right direction; perhaps the continuum diagnoses constitute a step down a slippery slope.

And adding murk to the whole DSM, is, even as I type, more organic – pathogenic (microbial, viral, retroviral, etc), medical, nutritional, metabolic, neurological, genetic, epigenetic, inflammatory, toxic, endocrinological – causes are being discovered implicated in the development of many of these illnesses of non-“mental” (i.e. non-psychological) mental disorders. (See related reading and additional references below.) At least we removed some symptom sets (such as toticollis, chronic fatigue and fibromyalgia) from under the umbrella of “mental disorders.” Perhaps we should do the same with a few others.

Related Reading:

Additional References:

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Last Updated: 7 November 2009

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