Wednesday, January 07, 2009

Where are the autism researcher bloggers?

Of course there are bloggers blogging about autism, everywhere, in staggering if not epidemic numbers. But my question is about bloggers who are also autism researchers. Where are they?

Prominent academics, scientists and researchers who blog aren't hard to find, including Nobel and Fields Medal winners, major journal editors, and clumpings together of well-known figures in various areas of research. You can't go far in Science Blogs without colliding with NIH-funded researchers in various non-autism fields.

And there are many bloggers who blog about autism research, including researchers, clinicians and academics in non-autism areas. But I'm looking for autism researchers who blog, about any subject, but particularly about autism research. For my blog-searching purposes, "autism researchers" are those whose main field of research is autism and whose autism-related work has been published in peer-reviewed journals.

Apart from me, there is the postdoctoral fellow Lindsay Oberman, who sporadically blogs at Psychology Today. Back in 2006, New Scientist published a letter I wrote in response to an informal article authored by Dr Oberman. Michael Merzenich has been in the authorship of a few autism-related papers and also has a blog, but he has extensively published in non-autism areas and is not primarily known as an autism researcher.

The Hub blogger and behaviour analyst Interverbal promises to cough up some published research some day, for which I'm impatiently waiting. There are now other behaviour analysts who blog about autism, but those I have located are service providers, rather than researchers.

In the remarkably science-and evidence-free vaccines-cause-autism camp, there's Mark Blaxill, known for calling autism a "silent holocaust." Mr Blaxill has been in the authorship of a few published papers, and is the sole author of a 2004 review in which he beautifully demonstrated--without in the least noticing--that amount of thimerosal in routine childhood vaccinations is totally unrelated to prevalence of autism. Autism Diva was kind enough to give me the space to point out the obvious. Mr Blaxill blogs with his ilk at "Age of Autism," but who would call him an autism researcher?

So where are they, the autism researcher bloggers, and if there really are so few of us, why might this be? There is no shortage of researchers in the area of autism, and autism has been a high profile field for longer than there have been blogs. I've limited my blog reading to English-language blogs, and I've left out individuals who are involved in autism research but who haven't yet published any of this research in the peer-reviewed literature. So maybe my criteria are too limited. But where are--for example--any of the numerous well-known autism researchers I've seen at IMFAR year after year? Why aren't any of them bloggers? Can anyone point me to more autism researcher bloggers?

28 comments:

Ivar T said...

There is this Translating Autism blog, though I was a bit turned off after I saw a comment of mine not appearing on a post about "recovery," while apparently others whose agendas I find questionable got through.

Michelle Dawson said...

In response to Ivar T., thanks! But the author of the Translating Autism blog doesn't have any published autism-related papers that I could find.

Nestor L. Lopez-Duran, PhD, is in the authorship of papers (I found two of them on PubMed) in a non-autism area, and reports on his blog that he conducts "studies on affect regulation and mood disorders in children and adolescents."

Autism Reality NB said...

Interesting question you have raised Ms Dawson. Should the identity of the researcher be connected in some way to the researcher being conducted?

If so who will conduct the research into the conditions of persons with Autistic Disorder with severe communication, behavioral, social and cognitive deficits?

Autism Reality NB said...

My apologies for the typo. The statement "Should the identity of the researcher be connected in some way to the researcher being conducted?" should refer to the "research" being conducted.

Michelle Dawson said...

In response to Mr Doherty, I don't know of any credible peer-reviewed journal that allows authors to be anonymous.

As to who conducts which published research, that depends on many factors, ranging from the priorities set by public and private funding bodies (which, in autism, have been hugely influenced by autism advocates), to the reviewers involved in funding and publishing research, to decisions made by individual researchers.

For example, autistics judged to be in the "severe" and "profound" ranges of intellectual disability have been largely excluded from the major ABA group designs. See my comments here, as well as this earlier post.

Jannalou said...

Mr Doherty is asking a question that makes no sense in the context of Ms Dawson's post. Ms Dawson has not asked "Where are the autistic researcher bloggers?" but "Where are the autism researcher bloggers?" - a question which rather obviously points to the subject of the research, not the diagnosis of the researcher.

Michelle Dawson said...

Thanks Jannalou. That interpretation of Mr Doherty's comment never occurred to me, given what I actually wrote in the original post. But you may be right.

Michelle Dawson said...

... and (this is just dawning on me) if Janna's right, is Mr Doherty diagnosing Dr Oberman (or Dr Merzenich, or Interverbal, or for that matter, Mr Blaxill) as autistic?

Anonymous said...

This is just a personal observation and suspicion, and as such does not hold much weight but...

it seems that many of the people involved in autism research tend to look down on and not spend much time on what might be considered "geeky" endeavors -- while they can preform the technical functions that their psychology lab requires in a satisfactory way, they do not use the internet to communicate ideas.

This observation comes from my experiences as a lab volunteer, meeting with researchers, and reviewing the literature.

Being a geek who likes and relates to autistic people, I found it difficult to communicate and be productive in that environment. I moved on to research in areas where I can be with people who have a similar personality type to my own.

A BCPSS Parent said...

Not a blog, but there is web based autism research here
The idea is to develop a database of information from parents of autistic kids and to provide a network for connecting people to research.

Autism Reality NB said...

Jannalou and Ms Dawson

I agree with Jannalou's comment. I misread the original commentary.

Thank you both for the correction.

jypsy said...

autism - autistic
.org - .gov
what a confusing new year for some...

Seems I've stumbled across a few cognitive science research blogs - not autism specific though and quite possibly not even researcher's blogs.

Do hope you'll keep us posted of any off-blog findings....

Socrates said...

Why? Well, ummm...

The low quality of public debate (ie the Autism Speaks ning board)?

Having to deal with people like John B-st. (ie Gorsky being accused of sodomizing autistic children)?

Researchers will almost always be far superior in knowledge and experience to their readers and commentators and will likely be forced into a possibly unwelcome, didactic role?

Ethical and professional constraints?

Why would researchers want to talk to their lab rats?

Especially when so many of us appear to be less than grateful for their work.

Anonymous said...

Two reasons.

First, as Socrates said on this comments thread, the low quality of public debate in this field is partly to blame.

The other half of the blame is down to the scarcity of proper, independent, peer-reviewed researched going on out there.

Gareth

laurentius rex said...

I obviously do not count in your distorted world of "autism research"

Education to my mind more important than so called science.

Without education there would no scientists and no-one would understand research.

The reason I am not published in the various journals is a moral one, I refuse to compromise on my copyright and will not support the over commercialisation that the academic paperchase for citations leads to.

Michelle Dawson said...

Catching up... in response to Anonymous at 1:07 pm, that's interesting and plausible enough, including the relationship between "geeky endeavours" and blogging. See the proliferation of very successful and productive economics blogging, from major figures in the field, which has been envied by science bloggers.

The extreme irrationality of the public discourse about autism, mentioned by Socrates and Gareth, is plausible too, including the extent to which autism advocates use misrepresentation and defamation. This is just boring and unproductive.

And that's too bad. In my view, the TMoB board has shown what can be achieved when individuals are interested in finding stuff out and productively exchanging information (yep, you have to put up with us going on about the weather, but...) I've learned a lot from the contributors to that gigantic, humble, low-tech thread (a thread with archives...), and have received some excellent criticism of my work there.

There are definitely constraints in what you can blog about when you are involved in scientific research--when you present your work at major research conferences, and publish your work in peer-reviewed journals. This is definitely a problem (it's a very big problem for me), but one that arises in most scientific fields so it can't alone be responsible for the dearth of autism researcher bloggers.

Michelle Dawson said...

Still catching up... in response to A BCPSS Parent, I wrote a bit about IAN when it started here. But while IAN has a forum, IAN does not yet include blogging by autism researchers. Also, there are many autism research groups which have websites, but I am looking for blogs.

A few other things...

There are some excellent general cognitive science and neuroscience blogs (which might sometimes take on autism), but to my knowledge, they are not written by autism researchers.

Autism research has been hugely influenced, going back decades, by autism advocacy parents (see, e.g., Silverman & Brosco, 2007). So it is not as though many or most autism researchers are unwilling to be influenced by non-researchers in some specific ways.

Also, there is no scarcity of autism research published in peer-reviewed journals. Quantity is not the problem. And as I wrote in the original post, there is no shortage of autism researchers--just a shortage of autism researcher bloggers.

Jennifer said...

Oh, if only autism had something like the schizophrenia research forum:

http://www.schizophreniaforum.org/

Michelle Dawson said...

In response to Jennifer, that's amazing, thanks. Here's a working link. I didn't know about that site.

Right away I can think of one well-known blogger who has published research in the area of psychosis. That would be the clinician and researcher Vaughan Bell of Mind Hacks.

Anonymous said...

I would cite two factors. First, the economists who blog successfully rely on breadth of knowledge to come up with lots of material. Since economics at least pretends to have a unified method, covering many different topics, this is relatively easy to do.

Second, the incentives may be different. A good economics blogger can use the blog as a pathway to paid speaking engagements, for instance, or writing a textbook. I would think this financial incentive is weaker in the area of autism research.

I don't think those are the only two differences but they are one place to start.

Tyler Cowen

konnie said...
This comment has been removed by a blog administrator.
Michelle Dawson said...

In response to Tyler, I largely agree. The wise autism researcher might ask, about blogging, what could I gain from this. Right now, looking around, s/he would see little to gain and much to lose. Clearly, I'm not among the wise...

On the other hand, so long as so few autism researchers have actually tried blogging (we have to start somewhere), judging the possible benefits and costs of blogging by this population is difficult. So long as there's only one or two of us struggling along, how good is it going to look?

One contributing factor to the success and productivity of the economics blogs is their quantity. I don't know the history, but a sort of tradition has been created.

Blogging is just what major economists do, so of course there is a lot of incentive to be seen as one of those major economists who blog. And then the back and forth among these bloggers in turn adds to the popularity, productivity and influence of economics blogs.

Michelle Dawson said...

The deleted comment above was (very badly placed) spam from an autism service provider.

laurentius rex said...

Michelle if you believe in the reality of SZ as against it's construction then there is no hope for you whatever.

The science bends towards the categories, the categories seldom aquiesce to objective enquiry.

What is happening is that although we have tools and techniques like we never had before to investigate neuroscience, they are all perverted by cognitive dissonance in a way. It is like a clumsy oaf (I should know I am one) wielding a well forged hammer to knock a nail in, the tool is fine, it is the workman who is at fault.

You mention economists, well can you begin to concieve of your own science within the scientific and mathematical framework of economists? And I can tell you economists have a lot to teach us about psychology and ecology and much else besides.

We can only understand mathematics the way we can because of our cognition, but we need those same deductions to understand our cognition, it is a closed system, can we ever get beyond it, does this not go back to Plato?

Michelle Dawson said...

I am delighted to agree with Mr Rex that some economists "have a lot to teach us about psychology and ecology and much else besides," including about successful and productive blogging, about the public sharing of work-in-progress, etc.

This is keeping in mind that a psychologist (and Association for Psychological Science Fellow) won the Nobel prize in economics not so long ago.

daedalus2u said...

What about having an abstract for a poster published? I have two of those in the autism field.

I am not seeking to be either included or excluded in your analysis. You have set the parameters you want to investigate and I have no argument with them.

I consider myself a serious autism researcher doing serious autism research. I appreciate that many do not give the same importance to my research that I do. I understand that is for diverse reasons. Reasons which I have limited power to address.

Marcela said...

People still have time to blog? I've seen some loose postings at neuroanthropology.net but the only autism researcher I've found with a blog is Emily at http://pahsophist.livejournal.com/

Michelle Dawson said...

Researchers in numerous non-autism fields blog (look around ScienceBlogs and Nature Network Blogs, just for starters); so do researcher/clinicians (Orac springs to mind, apart from Vaughan Bell, who is mentioned above).

Emily Williams' only formal paper that I know of is in press at "Medical Hypotheses," which is not a peer-reviewed journal. I'm sure any day now she will be in the authorship of many other published papers, and I am greatly looking forward to this. But so far (on Dec 5, 2009, or nearly 11 months after the original post was put online) she does not yet meet my (totally debatable) criteria for "autism researcher."