This article is clearly directed at the local Pittsburgh area audience where the experimental "clean room" approach was developed. It describes a proposal to raise funds and research dollars mounting into the millions to conduct experiments without describing the key elements of how this program might yield any useful information, e.g. will there be control environments that lack certain "clean" properties? The article provided almost no scientifically or medically-based information about autism spectrum disorder, its symptoms, and treatments. Serious and careful research shows that other, perhaps more traditional approaches can improve function. It overestimates the stage and potential benefits of the proposed treatment while providing no information about potential risks and adverse effects to the child and families. Overall, this article is lacking in key factual information and runs the risk of promoting false hope of "wiping autistic symptoms away." The story relies too heavily on the perspective of the lead investigator without seeking other expert opinions to minimize bias. It also does not provide any information that would direct the interested reader, who might be painfully affected by the disorders, toward factual resources. We suggest the following resources for the interested reader: from the National Institute of Health (NIH) http://www.ninds.nih.gov/disorders/autism/autism.htm and from the Centers for Disease Control and Prevention http://www.cdc.gov/ncbddd/autism/
This article does report costs estimated to design the clean room, $500,000, and that a minimum of $1 million dollars annually will be needed to support operating expenses. Cost of the experimental approach were not reported and may not be available at this time because the project is still in the planning stage; however, it is estimated the operational costs will support the experimental approach for only four to six experimental subjects per year.
This article did not present the details of any specific benefits, only speculation regarding potential benefits on the part of the project’s lead pediatrician. What evidence of benefit is there to warrant the million-dollar-plus investment?
The article doesn’t discuss the very real risks of the proposed experiment and does not seek out any disinterested expert resource. A hallmark of autism spectrum disorders is problematic social interaction. One can speculate that transfer of affected children out of the home and into a hospital "clean-room" runs counter to the effort to improve socialization that is a current, mainstream treatment for the disorders.
This article acknowledges that the proposed "clean room" experiment is an untested theory described as a "Hail Mary" pass approach that has only appeared on the Internet, not in the scientific literature. Yet it devotes 1,700 words to what it describes as a "fringe movement". It could have come right out and stated – in a few words – that there isn’t good evidence to support this approach at this time. Or, since it cited work done by a Virginia researcher, it could have included some of that data, if there are any.
This article fails to mention that "autism" is a misnomer and that the correct term is "autism spectrum disorders". This disorder ranges from the severely disabling to less severe syndromes, such as Asberger’s syndrome. Readers should be wary about "Hail Mary" stories when the subject is a disorder for which no clear cure now exists, and which can be so very painful and heart-breaking for sufferers and their families. By stating that "autism" is "skyrocketing," the story engages in disease mongering by using emotional terms with vague meanings.
The main source of information for this article was the project’s lead pediatrician. No other experts or expert opinions were included to provide balance to the story or to minimize potential bias. This omission is particularly egregious in an article about a disorder that can be so heartbreakingly severe and recalcitrant, and about untested theory. The devotion of millions of dollars to a "fringe" therapy may mean these dollars are diverted away from compassionate, scientifically based care.
This article gives brief mention (one sentence) to traditional treatments including educational, physical, speech, and behavioral therapies. There is no mention of psychotropic medications which are also commonly used.
The pollutant-free "clean room" experiment, designed to attempt to detoxify the bodies of young patients with autism, is in the conceptual and fund-raising stages, which have yet to be completed. This article does not indicate that the experimental protocol will not likely be implemented in the near future and that it will not be available to autistic children who are not enrolled in the research study.
The proposed "clean room" experiment for autism described in this article is new. However, this novelty should be viewed with caution as the treatment does not appear to be based in sound scientific theory.
It is not clear if the story relied largely on a news release, but it is clear that the story is dominated by the perspective of only the lead investigator.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
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