Thursday, October 20, 2011

The way they wear their hats....

About half a year ago we were asked to take part in research of genetic factors in autism.
We were OK with it. It would involve a bloodtest per person and some questionnaires, maybe duplicates of what we already filled in.

We were positive because all could be done before the summervacation and wouldn't interfere with school, nor work.

But we had to wait and when we were already forgotten the whole event we got the message that they wanted to go ahead.

Forst we would get the questionnaires at home and we had to come to the hospital for a blooddraw. That was OK.

But soon the plans were changed.
They wanted to give us the paperwork when we were there for the test.


What test?

They wanted to test us all with the ADOS, a test to diagnose autism.
We went along with it, but not in happiness.
Most of the kids were tested and got official diagnoses, so why do that again?

I couldn't manage to make appointments because the boys had their work and the girls their school.

So I got in contact and it turned out they also wanted to do a dyslexia test.

We were having 90 minutes of tests, then a wait of 15 minutes, and then a meeting with the big woman.

A wait of 15 minutes?
Yes, to put the video recordings on the computer.

Video recordings?
Yes... we were video observed too.

Without asking?
Oops, forgotten.

The paperwork was send home.
I had absolutely no time to go through cm's of questionnaires.

Big woman called. She sounded like a little girl, but who cares?
On my question why she didn't contact us sooner she said she had a death in the family and took time off.
Now she was in a hurry, all needed to be done before the tenth of november.

Like I am I tried to see the positive: we could do it all in the autumn vacation.

But the boys had different plans, and so did the girls, and I got the job at the paper, so I needed my time too.

We decided to bite through. If possible.

Then I opened the envelope with the questionnaires, expecting them for all of us.
Not only half of us.
So that meant double the amount of work or me. Ugh.

Still, a bit naive maybe, I thought it would happen.
Then I paged through the paperwork: a thick lot needed to be answered by a parent or someone else who knows me from my childhood.
I don't know anyone who knows me from my childhood exept someone who has terminal cancer and is above 80 years of age.
Do you see someone like that answering questions about my pregnancy, how I was at 4 years of age, and answer sexually inplicit questions?

On top of it, I should also ask that person to answer a questionnaire about my life before 12 years of age, typed in small letters, and ask a friend to do the same. My hb should also answer the same questions and the same ones should also answered by me.
Well, I'm at an age that people would have suggested I would be autistic or something like that at least once in my life.
There were also questionnaires about hyperactivity.

This too wasn't discussed with us.

So it completely went wrong with my positive attitude.
They should have discussed the fact that they wanted more and more, and that we needed to involve other people in this in a huge extent.

So I mailed my hesitations about the lot of questionnaires and asked them to reconsider, as all the boys were diagnosed by a wellknown psychiatrist and one of the girls was tested too. Not because she had symptoms, but because she wanted to be absolutely sure she had no autism.

Soon after hb was called by the psychiatrist of one of the sons.
We were not cooperative enough.
And the suggestion was made that the woman had already enlisted to present the case.


I was told we were part of a group of families, not the only family.

And why did she call him? He was not part of the research and not the supervisor, so in a way she was breaking confidentiality.

Well, she's got a mail now that she needs to reconsider the tests and lists.
That she needs to make appointments first with the boys, to be sure the whole thing can be done.
And that we are not the least bit motivated anymore.

We are motivated to give blood. No problem there.
But the way they have lured us into this research is at least unethical.


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