Published on 12, July, 2020
On a late-night (early-morning?) internet trawling sessions the other day, I came across a blog I hadn't seen before (link at the foot of the post), which those of you interested in the ethics and other standards behind research into autism may find interesting.
It is written by an autistic Canadian woman, who despite not being formally qualified as a researcher, has been getting up to her elbows in the topic, and in particular the way that research into autism seems to be held to less stringent academic standards than other areas of psychology research - notably when new interventions are introduced which make wild claims, often before they have been properly validated, so tainting the research into them.
I have yet to read all of it myself, and am unsure that I agree with everything, but it raises some very worrying points about the quality of autism research. Unfortunately, most of the referenced papers are behind paywalls, which is rather a shame. Also note that when she talks about "autism advocates", she usually doesn't mean grass roots advocates, but organisations such as Autism Speaks; which rather confused me at first.
The Autism Crisis (Michelle Dawson)
I highly doubt it has lower standards if you consider the research in top academic journals, such as Science, Nature, PNAS, Neuron, Journal of Neuroscience, Cerebral Cortex, Current Biology, TICS, eLife, etc. However, I do agree that there are some Autism-specific journals that have lower IF scores and lower standards in getting a paper accepted, but many other theme-specific journals (e.g., aging, addiction, ADHD, etc) have the same issue, as well as other generic journals with low IF.
I think it's in the specific area of interventions that she's most concerned, as opposed to theoretical research. What she seems to be saying is that interventions are being introduced in practice before peer-reviewed research has even been completed, and that because implementation and "marketing" to service providers is coming before, rather than after, independent validation, this impairs the ability to perform truly blind randomised clinical trials.
As I say, I'm still digesting it myself, so I'm not wholly convinced, which is partly why I thought I'd throw it out there to get some alternative opinions. I certainly haven't discounted yet that she may have a personal axe to grind of some sort.
How do you "research" interventions without trying them? I would think the "research" would be comparing potentially favourable interventions in larger controlled trials based on ones that looked promising in smaller trials less controlled trials.
I think we're on the same page then? It's not the trials of interventions that bothers you? As I said, I don't see how you can decide whether an intervention is useful or not without trying it. It's rather the making sure that the methodology used in the larger, more controlled trials, gives scientifically useful results?
By conducting randomised clinical trials - the key word being "randomised". True double-blinding is, of course, much more difficult with these kinds of interventions than, say, a pharmaceutical, but certainly would not be helped by promoters of the intervention having already widely spread their unproven claims and methodologies such that those performing the trial are influenced by confirmation bias because they can identify the intervention and have come into contact with unverified claims.
The blogger talks about this particularly towards the start of this post and those linked from it.
Having said that, if interventions and publicity are made widely available to service users (other than those taking part in trials) before they are verified, this isn't a problem of science research as such, it is one for administration of health-care systems, those who determine what research to fund, and the media, and I do think that this is a weakness in some of the arguments in the wider blog - she seems a little over-keen to blame researchers and the constraints that they work within rather than those who are misreading what their research is or is not able to tell us.