Sunday, May 18, 2008

IMFAR 2008

Note that I am just back from IMFAR and about to relax in a hot tub. When I have more time to do so, I hope to hotlink to papers, presenters, people and the issues I write about here, so come back in a couple of days to see how I have expanded this.

There are two mains things I can say about IMFAR, one is to give a report, or summary of the presentations, and posters, what my general impressions were and what I think was important and what was not.

The second, is to speak of my other role there as an advocate and ambassador.

During the presentations I was both, I wished to ask relevant and challenging questions of the science and the methodology where appropriate, but also at points to challenge the ethics where necessary. For example a study that was taking samples of CSF. I told the Dr behind that, that I thought that it was an unethical and intrusive measure considering it was not medically required. It raises all manner of questions about what is informed consent when dealing with minors and people who have impaired social understanding, heck I have been through the ethics meat grinder myself, so I ought to know.

Anway, I think the Introductory keynote speech by Frankie Happé was enlightening, she has come a long way from the article in Uta Frith's book, that 'dissects' the autobiographical style of those few published autistic authors there were back then.

She was questioning the single etiology of autism, and talking about multi axial conditions converging in autism. I challenged her to think even further to think beyond a triadic axis and to what it might look like if you forget the strictures of DSM IV TR.

There was an interesting 'round table' on diagnostic schedules, ADI ADOS, DISCO, Class’ battery etc. (can’t remember the name of the other one of hand, brain fade)

I raised numerous points about the inevitable restrictions of defining something and then only looking at what you define as within it.

The biggest challenge came on the second day with Geraldine Dawson’s key note speech. The Chair for that session was not allowing questions, so there was no roving microphone, but I was not going to be stopped from asking the question I wanted to, on ethics and respect.

I started by referencing an article in this months Journal of Autism and Developmental Disorder, which talked about autistic subjects and “healthy” controls

Did this not say something about an attitude towards ethics and a lack of respect that the science was dealing with real people who deserved that respect, as her peer researcher Morton Gernsbacher has pointed out.

What shocked me, and the audience I guess was not the answer, nor my mode of asking the question, as I was insistent but I don’t think rude, was the reaction in the audience from Matthew Belmonte, who immediately got up and bellowed that he was “tired of hearing that crap” and the usual complaint one hears about HFA’s not caring about non verbal and less intellectually capable autistics. Well that put me on the spot as it was difficult to avoid the proceeding degenerating into a 'Punch and Judy' show, but my response if I can recall properly was to say that I was misjudged by being automatically put into a ‘schema’, by someone who did not know what my involvement was across the whole of the autistic spectrum, a responsibility and duty that I have because of my position in the NAS never mind the many times I have challenged ‘Aspie supremacy, myself as hub members will be familiar I am sure.

Anyway it wasn't my intention to disrupt anything, merely to ask an important question at a point where that ought to have been allowed in the agenda.

Whatever, it put me somewhat on my guard for the rest of the day, however as a paid up student member of INSAR I did not neglect to raise the issue again at the end of the AGM and attempt to correct those misunderstanding of what I mean by respect. Something I don’t intend to let go of.

By the third day, I was worn out, couldn’t take in any presentations, certainly not really feeling competent to question and challenge any more, so I spent my time seeking out posters and speaking to those who were present to explain them. In fact I think having the poster presenters able to speak to their posters was a somewhat better means of exchanging information than the formal presentations.

At the end of the day, I was there to hear what is current, and seek out what is relevant to my own research and to follow that up, and besides the advocacy which was important, there were other researchers in fields that have a bearing on my own hypothesis who I wished to make contact with and exchange ideas.

As for any of the parties who were present for the event and are checking up on me via my blog. I expect eventually the paper (whose abstract I had submitted during the call for papers earlier this year) will eventually see the light of day somewhere. Most likely in an open access journal, because of my own ethics. You will have the opportunity to hear me present on my own Research during the NAS International conference later this year, and I promise to make it entertaining as well as informational as befits a media studies graduate.

Be seeing you :)


mike stanton said...

Thanks for that Larry. I look forward to a more detailed exposition when you have recovered from what sounds like a stimulating and exhausting weekend.

kristina said...

I met Matthew Belmonte some years ago, at the conference on Autism and Representation at Case Western University in Ohio. I thought very highly of his paper on narrative; he spoke also about his brother, who is autistic, and some terrible, terrible experiences in a group home. I wonder if the feeling in his response to you came from that.

I am very glad that you spoke during that session---the more discussion the better, and the more challenging questions, the better too. Enjoy the hot tub.....

laurentius rex said...

I recall he was at the autism and representation conference in Liverpool too.

I think he would have had a harder time expressing the views he did in that particular environment where a different aspect of autism was being examined.

What he did was to instantly jump to a conclusion as to the sort of person I am and associate me with that rather than listen and consider. He mistook the medium (an unasked for question, an interuption) for the message.

Whether a future IMFAR will ever include a round table on ethics, including autistic voices I don't know, but it certainly should.

Science tends to cut itself of from real engagement with social concerns, indeed I think Popper wrote about that a long time ago.

Petronius said...
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