Interesting blog about standards in autism research.

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)

Parents
  • 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?

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  • 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?

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