Given the price tag can be 50,000, or 100,000 or 200,000 to "restore each child to normal" and save them from "lifelong institutionalizaton" this is going to lead to more than that "let down" feeling I had when I found out Santa wasn't real.
Now mind you, in keeping with the recent mandate to engage in "evidence based practices" I was careful to use well established widely used scientific procedures to locate sound, unbiased, high quality sources of information on efficacy and effectiveness. Another way of putting this was I could NOT simply read & report what the first 20 papers said, even if they all said the same thing. I had to follow procedures to identify only the highest quality, "most likely to be free of bias" sources, which turned out to be like looking for the proverbial needle in the haystack.
I did this and ended up with this conclusion:
- The evidence to support EIBI for children with ASDs is weak.
- Some say it is promising.
- Others say it is preliminary.
- Others might say it can work by leading to outcomes for some things for some children and those outcomes are modest.
- They all say that such results in no way establish the superiority of this program over others.
- They all say it is generally frought with methodological weaknesses that lead one to not be able to determine for sure how effective it is and for whom it is effective.
The reviewers who claim more dramatic results are the producers of the technology. Hmmm. That's not surprising but WHY are parents, providers and policy makers so easily bamboozled? Especially when the pricetag is 50K or more per year per child over several years and involve tremendous time, committment, and sacrifices etc. from families?
The phenomena, in my opinion is due to an "Information Cascade" in the ASD community. This Cascade has lead to a lopsided portrayal of the evidence in the published (as well as public) domains. It means something has happened on a grand scale that can lead to a lot of faulty/costly decisions; ineffecient policies, and unhappy consumers. The information Cascade comes about this way:
Even though the consensus in the scientific community is X, this X is a little known secret due to the fact that most of the publications cited are papers and sources that do not contain X and instead, suggest Y (Y= this is the bomb, this is the ONLY proven treatment, this will restore your child to normal and without it, your child will end up institutionalized.....)
I borrowed this explanation and the terminology from a recently published article by Dr. Greenberg, Assoc. Professor of Neurology at Children's Hospital Infomatics Program and Department of Neurology, Brigham oungWomen's Hospital, Harvard Medical School.
[ see Steven Greenberg (July 21, 2009) How citation distortions create unfounded authority: analysis of a citation network. BMJ,339, b2680]
According to Dr. Greenberg, "Unfounded authority" is created by "citation bias" -- avoiding the citation of papers that weaken or refute (however valid) the desired belief. By citing only papers that support the belief, that belief is expanded and hypothesis is converted to fact through citation alone. Through distortions in the social use of citations, bias, amplification and inventon are used to generate information cascades resulting in the situation I have found with the ASD treatment/interventon literature.
I guess we need someone like Dr. Greenberg to test my hypothesis, and also to help us figure out how to set the record straight before we bankrupt our healthcare system and disappoint a lot of families of children with ASD- worldwide.
I hope he is quick about it. I am not very popular these days and I did everything by the "scientific book."
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