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Date:         Wed, 30 Sep 1992 14:36:45 +1000
              <AUTISM@SJUVM.BITNET>
From:         LNCJB@CC.NEWCASTLE.EDU.AU
Subject:      Re: Facilitated Communication Question

John W.,

The following excerpt from your post, indicates how differently autistic
people (me) and normal people (you) perceive the language we both use.

>>The first part is the 'bullshit'..... ever heard of 'experimenter bias'?
>
>Attitudes like this are why f/c gets such a bad name.  The guy suggests
>testing the procedure and the answer is:  "Don't do it because the
>experimenter might be biased."  Talk about bias!

I wasn't saying "Don't do it because the experimenter might be biased". I
was referring to the use of the words "perceived intelligence" as the
'bullshit'. I mentioned 'experimenter bias' as a possible cause of the
conflicting experimental results that have so far been published.

I freely admit that I am biased - in favour of autistic people being treated
like intelligent human beings rather than guinea pigs to be manipulated
according to the whims of the research scientists. If the research scientists
want proof of the validity of FC let them find some other group to experiment
with (e.g. brain-damaged children). Knowing the particular sensitivities of
the autistic child, I would prefer not to see them subjected to this type of
treatment. There are many aspects of the type of experimental situation
suggested by John Kasab in using autistic children in these types of
experiments that really worry me and I doubt that the results would be any
more useful than any that have been done already.....they would still be
inconclusive.

For those of you who have failed to read the previous posts dealing with the
'pecularities' of the autistic child or those who still hold to the view that
such children are 'less than normal', I will list some of the reasons why
these experiments won't work.

The autistic child:-
1)  Is extremely sensitive to stress and is unable to function 'normally' under
    even minimally stressful conditions.
2)  Doesn't like change..... unfamiliar people or places induce stress.
3)  Is extremely aware of the emotional states of others.... the stress levels
    of others or over-enthusiasm of the facilitatee for the child to perform
    well will induce stress in the child.
4)  Is very demanding of him/herself..... will often refuse to co-operate in a
    task if they believe their performance will not be 'perfect'i.e. will often
    fail to respond if he/she is unsure of the 'right' answer.
5)  Is sensitive to physiological stress which can be brought about by
    exposure to a variety of substances (including fumes, food, etc. that he/she
    may have encountered during the day on the way to or during the testing
    session - particularly the perfume or aftershave of other participants).
6)  Is also subject to physiological stress due to internal biochemical
    imbalances.
7)  Tires/gets bored very easily if he/she considers the task too demanding/
    boring will 'tune out'.
8)  Interprets language very literally and will often fail to comprehend what
    is required.
9)  Has difficulty focusing on spoken language and unless the instructions are
    keep brief and to the point will automatically 'tune out' for brief periods
    often missing vital parts of the instructional message.
10) Could fixate on anything that is out of place in the testing environment
    .... a loose thread on the clothing of the participants; a pimple on the
    chin of the examiner; anything at all - it would be impossible prepare
    a distraction free testing situation.

I could go on, but I think if I haven't made you aware of why tests on
autistic children are just not feasible by now, I never will. My major concern
however is the effect this type of testing will have on the child. Autistic
children are subjected to enough stress on a daily basis as it is, I can't
condone placing any one of them in a 'stress-provoking' situation just for
the sake of satisfying someone else's idea of a scientific enquiry. I care
more about them than that.

>People with biases in both directions are free to experiment all they
>want.

Here we differ in our opinions dramatically.... I don't believe that anyone
has the right to experiment freely. Especially not when the subjects are as
fragile emotionally as autistic children are. Any experiment that has the
potential to cause discomfort to the subject, especially without the expressed
desire to participate in the experiment with full knowledge of what is to take
place, should be outlawed and I don't believe that parents have the right to
nominate their non-verbal children for any of these procedures either. In my
view, to do so would amount to child-abuse.

>It is up to them to convince the counterparts in the other camp
>that they have figured out ways to eliminate the effects of bias.  The
>potential tragedy is having something that simply doesn't work in
>circulation for years because people keep saying "experiments can go
>wrong, thus we should do no testing."

I agree with Anne and Ray that FC should be seen as a 'tool' - in the same
category as glasses and hearing-aids.... it'll help some but not all.
What the legal profession makes of it, doesn't worry me particularly - they
belong to an entirely different world to the one I live in, so I'll let you
normal people work that one out. Just make sure you don't 'injure' any of
'my autistic children' in the process.

In a previous post, you wrote:

> I also want to see more scientific studies and want to see the results
>compiled and made available to those who are getting their hopes raised
>by the procedure as well as for those who end up investing time, effort and
>money in the procedure, including educators, taxpayers, parents as well as
>the autistic children themselves.

That's the sort of response I anticipated from a NORMAL person when I spoke
of QUALITY OF LIFE..... that's the major difference between us - you can only
perceive *quantity* and to me only *quality* matters.

Carolyn
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