Autism Reversal: The Story of Poor Reporting and Bad Science.
Dr Liliya Wheatcraft, A?DHD, MRCPsych, FRSA
A?DHD Psychiatrist: LinkedIn Advisor | Autistic Burnout | Meltdowns | Chronic Pain in Autistic People || Autism/A?DHD/ADHD in Adults & Older Adults || AV sessions with email support
I have a lot on my plate this week, but the new study (purportedly published in the MDPI journal Sexes - which would have been perplexing in and by itself, had it been true; I see little reason for Sexes to publish an article on “autism cure”) has exploded my Linkedin feed on Monday, and I felt compelled to look into it further.
The Article.
The first thing I learned was this: if the reporters of Daily Mail and Telegraph had done half of their job, I wouldn't be writing this article.
It Is NOT Published.
Why?? Because it hasn't been published.? It has most definitely NOT been published by Sexes.
It Is NOT Peer Reviewed.
In fact, having obtained a copy of the article, I established that it has not even been peer-reviewed!? But, hey - it's a great headline, right?? Right?...
No.? But first, let me explain why the article should not be talked about from the objective, scientific point of view, whatever your knowledge, thoughs and beliefs are concerning neurodiversity and autism diagnosis..
How to Read a Clinical Research Article
I'll show you how to use an acronym PICO. I learned this from Professor Paul Glasziou himself - arguably, one of the founders of Evidence - Based Medicine (EBM).
P is for Patient(s).
You can also interpret P as the Population studied.
Well… It's a single case report study.? Technically, we could stop here.? In the hierarchy of clinical evidence, the case reports sit on the lowest run of trustworthiness/validity/reliability.? Behind cross-sectional survey, and case-control studies, and well behind controlled trials.? As for the double-blind randomised controlled trials - the gold standard for the therapeutic studies… You won't see the dbRCTs with a telescope from where this reported “cure” stands.??
But, let's continue with PICO for the sake of learning.
I stands for Intervention.?
Oh, what hasn't been used as a part of the Intervention in this case!? From the “good old” ABA, at 20 hrs per week, to the craniosacral therapy, to homeopathy, to naturopathic medicine - whatever it meant in this case.??
I don't know about you, but I was left unimpressed with the Interventions.? It was a collection of unproven interventions stuck upon each other, in a precarious pyramid of “ One thing was noteworthy, and that was “catching up with routine vaccines”.? Have we reached the depths of medieval ignorance, so we have to praise parents and clinicians for following the minimum requirements for preventative care on the edge of the second quarter of the 21st century?? I fear we might have, but I don't want to surrender to the apparent inevitability just yet.
C is for Controls.?
There was no controls.? That's the point of the Case Report.? Otherwise, it would have been a Case-Control Study.
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O is for Outcome.
Outcome was reported as “reversal of autism”.? They used a measure called Autism Treatment Evaluation Checklist (ATEC), and quantified their outcome of choice by the decrease in ATEC scores of both infants.
Questions, Doubts and Idiosyncrasies
I have so many questions at this point.?
The Outcome Measures
Why Choose ATEC?
For starters, why choose a parent - reported outcome measure (ATEC) and not even supplement it with something quick and easy, like CARS - or any other of a dozen of available professional-administered autism checklists?
Why Omit MSEC?
The authors could argue, of course, that ATEC has a good correlation with, eg, CARS.? That may be true, but surely they are aware that the correlation is at its best & fullest when ATEC is used along with MSEC (Mental Synthesis Evaluation Checklist) - a complementary parent-reported tool developed by the authors of ATEC (Rimland et al)? to measure complex language comprehension.? So, why did they not use MSEC alone, to support their claims?
What about the Natural Improvement of ATEC Scores with Age?
I am also concerned that the paper doesn't address an obvious point: the fact that the ATEC scores are known to improve (i.e., decrease) with the increasing age of the child.? This is not accounted for at all.
Then, I have questions about using the ATEC scores (either on its own, or, indeed, with MSEC) while making the bold claims of reversing autism.
Regardless of any other issues with the claim (ethical, philosophical, sociological, genetic or neurological - I will have to address these in another article), let's be honest: even a substantial decrease in symptomatology cannot and should not be mistaken for reversal of the condition.
If you want to prove absence of autism symptoms, why not use a tool like ADOS or ADOS-2 - the tools widely used specifically to identify and diagnose autism…?? (Incidentally, it doesn't make either ADOS or ADOS-2 a “gold standard test for autism diagnosis, contrary to the oft made claims). At least, at the endpoint of their torturous endeavour??
If the authors are justified in claiming "reversal of autism", why not prove it with the ADOS score below the autism cutoff score?
Conclusion.
It looks like all the angst and upheaval on Social Media and real life is, quite literally, much ado about nothing.
The story itself, as it has been reported in the media, is nothing more than really poor journalism combined with troublingly bad science.?
And if it ever gets published, I will do my absolute best to have it recalled.
Providing Neuro-affirming Diagnostic Evaluations for Autism in Massachusetts, Connecticut, New Hampshire, and New York!
7 个月Oh my goodness. I just went down a rabbit hole of the conflicts of interest, as well. I quite literally feel ill. Christopher D'Amato works for "Documenting Hope" Which is a project by the fine folks at "Epidemic Answers". "There is a vast body of medical and scientific literature that supports the premise that using an integrative and individualized therapeutic approach to address core biological processes can result in the improvement and even reversal of chronic disease. We have been observing this recovery phenomenon in families across the country for well over a decade, and now we are rigorously studying it." Ummmmm, pretty sure that's the opposite of how you're supposed to go about conducting research. Confirmation bias anyone...?
Second act scholar, occupational scientist, research coordinator, playful academic.
7 个月Apparently it has been published in a journal which claims to be peer reviewed - the journal has fast turnaround times and pays reviewers with vouchers towards their own APC costs however. DOI: 10.3390/jpm14060641 As someone not in the US, is this really an IRB loophole? They are acknowledging that it has no research value in excluding themselves from it being human subject research. The article states: "Institutional Review Board Statement This case report did not require ethical approval. Since there were fewer than three individuals in this report, this is not considered a systematic investigation designed to contribute to generalizable knowledge. As such, this work is not considered to be human subject research."
Specialist Neurodevelopmental Assessor (Autism & SpLD) & Educational Consultant
7 个月Documented ignorance and discrimination
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7 个月Thank you Dr Liliya Wheatcraft, AuDHD for such a brilliant response!!
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7 个月#shadowgovernment