CeleRate
11-01-2003, 10:33 AM
http://www.autism-biomed.org/canthurt.htm
"What is wrong with an empiric trial of a new treatment for autism" if it "can't hurt?"
This is a question that I've heard recently in relation to secretin and this is my reply. I believe that a parent should insist on a treatment that is both safe and effective. But, what if a treatment is believed to be safe but it is not known if it is effective? What's wrong with "well, it can't hurt to try it?" Unfortunately this attitude leaves one open to being exploited by the various snake oil peddlers out there and wasting several hundreds or thousands of dollars. I would not subject my own child to a treatment that is not evidence-based or, in the absence of evidence, makes no biological or physiological sense; i.e., does not have a ring of plausibility within the range of phenomena that are likely to occur in biological systems. After all, not everything is possible. What may at first seem possible is constrained by the limits of plausibility, especially in the instance of as complex a phenomenon as autism. In view of this complexity (see commentary, What is autism?) I cannot begin to imagine that something as simplistic as a single injection of secretin; or vitamins; or hyperbaric oxygen; etc., can re-arrange "the wiring" of the brain (if the wiring of critical modules subserving social cognition was even there in the first place). In fact, in the instance of a single injection of secretin one would have to invoke an improbable sustained effect on cell biology (translational processing and protein synthesis; or neurotransmitter synthesis) persisting well beyond the usual time course of action of a hormone.
C.R.A.P. detector
When a proposed empiric treatment doesn't "make sense" it sets off my C.R.A.P detector. This is a term I heard used many years ago by Dr. Harriet Dustan (once a prominent cardiology researcher at the Cleveland Clinic Foundation). More recently I have seen it translated as "Circular Reasoning or Anti-Intellectual Pomposity" by GR Norman and DL Streiner in "PDQ Statistics" (1986, published by BC Decker Inc., Toronto, p. 13).
What do families really need?
What families really need are supports, respite care, and a case manager to provide continuity of care and who is "there" for the crises that frequently arise at home. And who is "there" to constantly prod the schools to deliver one-on-one truly individualized educational services and have a way of monitoring whether or not educational goals are being met. Until the fundamental neurobiological basis of autism is understood, the only things we can offer are intensive educational and behavioral interventions and certain medications for a "blunt instrument" approach to managing challenging behaviors. At the same time we have to be optimistic with families that some day the complexity of autism will be penetrated by advances in neuroscience.
Commentary by Ronald J. Kallen, M.D., ©1999
"What is wrong with an empiric trial of a new treatment for autism" if it "can't hurt?"
This is a question that I've heard recently in relation to secretin and this is my reply. I believe that a parent should insist on a treatment that is both safe and effective. But, what if a treatment is believed to be safe but it is not known if it is effective? What's wrong with "well, it can't hurt to try it?" Unfortunately this attitude leaves one open to being exploited by the various snake oil peddlers out there and wasting several hundreds or thousands of dollars. I would not subject my own child to a treatment that is not evidence-based or, in the absence of evidence, makes no biological or physiological sense; i.e., does not have a ring of plausibility within the range of phenomena that are likely to occur in biological systems. After all, not everything is possible. What may at first seem possible is constrained by the limits of plausibility, especially in the instance of as complex a phenomenon as autism. In view of this complexity (see commentary, What is autism?) I cannot begin to imagine that something as simplistic as a single injection of secretin; or vitamins; or hyperbaric oxygen; etc., can re-arrange "the wiring" of the brain (if the wiring of critical modules subserving social cognition was even there in the first place). In fact, in the instance of a single injection of secretin one would have to invoke an improbable sustained effect on cell biology (translational processing and protein synthesis; or neurotransmitter synthesis) persisting well beyond the usual time course of action of a hormone.
C.R.A.P. detector
When a proposed empiric treatment doesn't "make sense" it sets off my C.R.A.P detector. This is a term I heard used many years ago by Dr. Harriet Dustan (once a prominent cardiology researcher at the Cleveland Clinic Foundation). More recently I have seen it translated as "Circular Reasoning or Anti-Intellectual Pomposity" by GR Norman and DL Streiner in "PDQ Statistics" (1986, published by BC Decker Inc., Toronto, p. 13).
What do families really need?
What families really need are supports, respite care, and a case manager to provide continuity of care and who is "there" for the crises that frequently arise at home. And who is "there" to constantly prod the schools to deliver one-on-one truly individualized educational services and have a way of monitoring whether or not educational goals are being met. Until the fundamental neurobiological basis of autism is understood, the only things we can offer are intensive educational and behavioral interventions and certain medications for a "blunt instrument" approach to managing challenging behaviors. At the same time we have to be optimistic with families that some day the complexity of autism will be penetrated by advances in neuroscience.
Commentary by Ronald J. Kallen, M.D., ©1999