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.
Trogluddite said: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
I don't see where she says that...
This is the post you are referring to, right?
Autistics have long been subject to separate, unequal standards in both research and practice. Claims that standards must be lower for autistics than would be acceptable for anyone else continue to prevail. When it comes to autism interventions, autism-specific low standards have proliferated, by popular demand, and are now nearly universal. History tells us to recognize this as segregation at its insidious worst, but this has not yet happened.
Instead autism organizations and advocacy leaders, including those known for opposing each other, agree when it comes to segregating autistics this way. In their documents, policies, recommendations, and lobbying, they all promote autism-specific low standards—especially in interventions. Ignoring the strong lessons of history, they all support the segregation of autistics from the basic rights and standards which protect and benefit everyone else. Their high-profile disputes are, instead, over which kinds of bad science and bad ethics should be foisted on autistics.
The results are obvious. In non-autism areas, poor quality research and its harms—its waste of resources, its misleading findings—are vigorously condemned. There is recognition that even the best existing research standards are flawed and need always to be improved. But when it comes to autism, standards have instead been lowered or discarded to accommodate the extremely poor autism intervention literature. Poor standards in intervention research are seen not as harmful and wasteful, which they are, but as what autistics need and deserve. Resources have poured not into improving these abysmal standards, but into making the very poor quality autism intervention literature more powerful and influential.
In one influential paper, the authors devised an elaborate system of autism-specific low standards for evaluating intervention research, then suggested extending this segregated system to other developmentally disabled individuals. The authors did not suggest doing this to the typical population, to people like themselves—this clearly would be harmful and unacceptable.
The segregation of autistics from basic standards in research has lowered the bar for standards applied to autistics in other areas: in practice and professional ethics, in public policy, politics, law, journalism, medicine, education, and the list goes on. It has further removed any incentive to fund, conduct, or publish good quality autism intervention research. Yet, the popular effort to impose autism-specific low standards in the area of intervention research can be shown to lack any scientific or ethical foundation.
I haven't yet read all of her blog entries as it's quite long, but started from the top few. I thought you were referring to that one in particular since it seemed most direct in saying that she thinks research into autism seems to be held to less stringent academic standards than other areas of psychology research.I've now looked at a few more posts about her thoughts on specific papers, and I think a few share similar problems to the previous post that I criticised. And I agree with her on some of the posts on deficiencies of some of the papers and research questions. And I think it's good that she has noted these and compared results from various studies showing contradictory or vague conclusions. But I think that's just how science is at the moment, in any psychology research domain, it's not limited to autism research. There are just a lot of things we don't know yet, and since the data are collected from people and different designs, there will be variability across studies. That's natural. So we need more and more research over years to clarify why some studies show different results, and refine current hypothesis that are vague or incomplete.