Wednesday, October 26, 2011

Tuesday again

Today I dreamt that the alarmclock made a lot of noise but that I was still so tired that I put it out and turned on my other side to sleep more.
About an hour later (in my dream) the alarm went and I was wide awake, remembering the whole sequence of putting the alarm off, taking my glasses, etc etc.

Strange.

When I came downstairs it was still far too early.

Part of the day was spent on preparing for my activities for the paper.
Not long from now the online paper will air and I have to write a lot.
Pending are a few articles for the printed paper, which are completely different in style and content.

Then I had to take action towards the researcher.
I don't trust her one bit as it's clear she has put a presentation on her agenda without even conducting the research. That's absolutely not done.
The fact that each time I get in contact with her she frees a new piece of information about the research is at least a suggestion that she's working without the expected ethical standards.

Tomorrow is the big day.
We feel we're forced into participating in the research without informed consent and we're torn between wanting to help someone, wanting to move autism research forward and knowing our genetic code.
But she has in no way told us she would give us the results.

I expect quite a discussion tomorrow, because I don't want to be fooled.
I can't find anything about the research in my town, except for a remark that research is done.
As a lot of research is a repeat of research in other countries I expect a mimick of The Autism Genome Project.
So I did a quick search with that title and the name of my town and heypresto! There we are. So they want to be famous on the researchmodel of other researchers, adding things to it that can't be added. They want to link certain genes to certain questions in the questionnaires/to certain symptoms.
To do so you need a statistical method with lots of families and when they don't have direct access to the data of the large international genome project they won't be able to get any reliable results.

We will be tested with one of those autism tests.
When we said "yes" when we were asked to participate in genetic studies we didn't know we would be tested. I would have said "no".
I'm way beyond proving to people like that that I've got phantasy, look at another person's eyes, use appropriate gestures and the whole lot.

The whole toodoo will take all day, because we have to bring and fetch people each 1 and a half hour. For the busses special cards are needed nowadays and we don't want to buy them for everyone. They're too expensive.

We won't get anything in return, not even the costs for travelling.
People who have normal families are compensated for their efforts and travelcosts. Thank you. (NOT!)

So I'm not very willing to particpate and I probably won't do the test. They won't like it, but they should have informed us properly so we could have made a free decision.
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