EIBI, Lovaas & Autism: The Great Information Cascade

It took me literally hundreds of hours of research to discover that the Great Santa of Autism Spectrum Disorders (Early Intensive Behavioral Intervention --aka EIBI ,EIBT, Lovaas, etc.) is really--based on the scientific evidence, not err very real.

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."

Help with Honest Hype

My daughter just informed me that people won't read my blog if it does not have hype because people like human conflict and readers will not have the attention span to read through a bunch of dry commentary about the sloppy and meager body of research related to autism. She is into writing and journalism and after hearing her out, it does make sense in this fast paced information age. This will be a challenge because the purpose of this site is to not incite emotions but to educate reader about the exaggerated claims being made by even the most popular and highly recommended producers of ASD interventions. The most popular interventions, including EIBI or Lovaas type programs based on the principals of Applied Behavior Analysis fall into this category. This is unfortunate for me because that have a rather "passionate" and organized body of advocates including parent advocates who have been carefully groomed and fed only the information producers want them to know about. Close behind them is RDI and Greenspan when considering only the mainstream interventions. They do not lie. They are not quacks. They use more nuanced methods which, for the proponents of the Lovaas products, are part of an aggressive marketing campaign for the past 15 plus years -designed to get "mainstream" acceptance of treatments that are in reality "helpful for some" but problematic on several levels. The EIBI strategy includes exploitation of the fact that the average parent or public service professional lacks the scientific background to tell the difference between good science and science that, well makes claims and "suggestions" that are not consistent with their data. There are several sources in the scientific literature as well as mainstream domains, to support my conclusions. I have just begun this site but eventually all of these sources will be made available for review and discussion.


In the mean time, I am wondering where to start. Do you want to hear about the many "strategies" producers use to influence your opinion or do you want to talk about the problems with the research and given those problems what the data can tell us-when hype is removed?

Dr. Good, Bad and Ugly

We are in the process of editing the list of references and offering some neutral sources of information and suggested reading. In the mean time, please feel free to offer your own ideas for getting at "the bottom line." Please remember you are welcome to disagree but keep it respectful and polite. Thank you for sharing your thoughts!

What does the Science Really Say?

GOOD: You may hear or read about "evidence based" treatments or practices and the importance of planning and using approaches that have been scientifically tested. This is something that has been around for hundreds of years but more recently is being promoted at the national level to bridge the gap between science and practice in "the real world." With more attention to ASD and more public money dedicated to gathering scientific evidence, we are beginning to build a foundation for scientific evidence related to many dimensions of ASD such as what the likely causes are, the commonalities and differences among individuals with the diagnosis, and how that knowledge can inform our research on effective interventions.


BAD: You may hear in the news about children who were "cured" from their Autism. You may see similar claims being made by individuals with advanced degrees and from institutions with lofty names. You may hear from a friend, family member or professional swearing by such a treatment and from lofty sounding "institutes" about the wonderful things they are doing for children with ASD. You may read that X treatment was found to be effective compared to all other treatments. But you may not want to tell the provider from Y, who disagrees.

Ugly: The truth isn't all that ugly. It is just ugly that the truth is having such a difficult time getting the representation it deserves in the public domain.

The frequently suggested "finding" that there is a well established large body of evidence supporting one treatment as effective for children with ASD is not consistent with the body of evidence. There is also no body of evidence to support the notion that a treatment exists that will restore a child to "normal" while ensuring against lifelong dependency and institutionalization.

I don't know what it is going to take to reign in the misleading claims and propaganda other than to provide "the pieces left out". The body of scientific evidence we need to rely on for "the bottom line" should be based on consensus of the independent scientific community. Producers of a treatment technology or investigators affiliated with a specific treatment may disseminate large volumes of publications, reports etc. extolling the virtues of and superiority of their treatment, accompanies by reams of scientific data, testimonials and endorsements. If they consistently arrive at conclusions that are inconsistent with the independent consensus, results, regardless of how well referenced, should be interpreted with caution and healthy skepticism.

There are "Gold Standards" and there are lesser standards. The lower the evidence threshold is set, the less powerful and valid the conclusion. The more rigorous methods require more resources and tend to lead to more conservative results. Quantity does not equal quality. Independent reviewers know how to judge the merits each study and to also look at them when combined to see if "the whole is greater than the sum of it's parts. Depending on how each was designed and carried out, having a bunch versus a few may or may not make a difference in terms of strength of the data and the conclusions that can be made from it.