Welcome to my new blog, which stands somewhere between the hurly burly of my personal blog and the quiet backwater of my academic blog.
Why this blog?
I currently have a book in preparation, on this topic, which is proceeding alongside my research, and I want this blog to become a public reflection of that, helping me to focus my ideas, and also for me to share my avenues of thinking.
It has concerned me for sometime, that knowledge for knowledge sake is not always a good thing if it is pursued without regard either to the consequences of the research for public policy, or the consequences of the research to the ‘stakeholder’ group either as recipients of that public policy or as the actual ‘subjects’ of the research itself.
There is a long history of unethical medical research, both in totalitarian states and sadly in democracies too, and there is an even longer history of research being carried out as if the subjects of that research are merely there to fulfil the researchers careers or curiosity.
As someone who has been a research participant and also someone who consumes the literature, a lot of it has made me very uneasy, when I have seen the terms in which my ‘kind’ have been described.
A classical example of a mainstream, popular, and acclaimed scientist who has stepped out of his own field to treat us with apparent calumny is Stephen Pinker, who in his popular book “The Blank Slate” (Penguin London 2002) states:
“Autism is an innate neurological condition with strong genetic roots. Together with robots and chimpanzees. people with autism remind us that cultural learning is possible only because neurologically normal people have innate equipment to accomplish it.”I have covered this particular instance before and so has Morton Gernsbacher in this article “The True Meaning of Research Participation” redeeming the image of the humane scientist thereby.
Perhaps it is not all Stephen Pinker’s fault because he has been at the receiving end of a lot of bad theory and research. My being able to write this blog neither as chimpanzee or robot, but as fully human ‘autist’ abolishes the notion that our thought patterns are of lesser consequence and validity than ‘neuro typicals’
It is little wonder that I felt impelled during last years IMFAR conference to ask keynote speaker Geraldine Dawson, why so much of the research being showcased at that event spoke of “autistic subjects and healthy controls” implying that we are 'diseased'. For this I was vilified by a member of the audience who I shall on this occasion refrain from naming.
I do have other concerns about where the majority of the expenditure on autism research is going, and the extent to which the pragmatic aspects of autism are being ignored, to the point that there are very few evidence based interventions, and those that have been visited have hardly been researched in the best traditions of properly controlled trials and peer review. Qv. fellow autistic researcher Michelle Dawson, on the misbehaviour of behaviourists.
Whilst I frequently disagree with Ms Dawson on what does and does not constitute autism ‘advocacy’ and the degree to which her branch of the science is or is not contributing to an ethically based construct of autism, my home institution shares her scepticism with regard behaviourally based interventions and the acceptability and accuracy of the science behind them to the extent that it is actually hard for me to find journals on that perspective.
I also share with Ms Dawson the view that we need to treated with respect by the research community, and that we as diagnosed individuals have as much right and indeed competence to be researching in the field as anyone else who has proved their academic credentials.
So here goes:
These are the ground rules for comment. There is no room for the “oh yes it is, oh no it isn’t” school of pantomime banter one gets from hard core fanatics with sundry axes to grind.
This is not a place for 'neurodiversity' vs 'curebie' battles to be fought out and ‘ad hominem’ arguments are especially not welcome
I want this to be a rational, and cool space where serious issues of ethics and research can be discussed. I am sure even my erstwhile opponents would concur that there are common matters regarding the conduct of research on which we can agree.
Above all let us have science by all means, but let that be science with a conscience.