HDTenEightyP/NetNews huggingface dataset:
Newsgroups: bit.listserv.autism
Date:         Wed, 30 Sep 1992 11:55:14 EDT
              <AUTISM@SJUVM.BITNET>
From:         Wendy Bousfield <LIBWBB@SUVM.BITNET>

     The request for information on auditory training was made recently.
My stepson Gene, a young autistic man of 23, received auditory training
in February of this year in Newberg, Oregon, in an experimental program
at the Institute for Autism, under the direction of Steve Edelson.  We
were especially interested in this form of treatment because, ever since
Gene began to facilitate, he has been complaining of sounds that are
disturbing or even physically painful.  He would complain that snow fall-
ing or the furnace coming on would keep him awake all night, for instance.
Being in groups of people was difficult, primarily because of the noise
level.

     The cost of the treatment, plus travel, food, and lodging, came to
well over $3,000.  We agreed that it would be worth the expense, if all
that was accomplished was to make him more comfortable.  However, the
results went way beyond that.  After three days of morning and afternoon
sessions, Gene took a shower by himself for the first time.  (Hitherto,
he had needed verbal prompts for each stage in the process.)  Around the
same time, he came downstairs to the diningroom for breakfast without a
verbal prompt.  During the two weeks of treatments, he and my husband
went to the Portland Zoo.  Gene's mother had tried to take him before
the auditory training, but sounds (seals barking especially) had terrified
him.  In Portland, he had a wonderful time looking at the various animals
and facilitated on a tiny portable word processor he carried around how
"polite" the ducks were.  (Presumably, they no longer made unbearable
noises.)

     The staff at the Institute had advised us to watch for changes in
the six monts after auditory training.  One of the most interesting changes
to occur has been that, not only Gene's hearing, but his sense of taste
and smell have been normalized.  Gene facilitated that before the training,
he could tell vegetables apart only through looking at them;  they all
tasted alike.  Now he can distinguish tastes.  My husband took him out for
a pizza, and Gene was startled because the smells of the restaurant no
longer overwhelmed him.  By the same token, I bake bread frequently, and
the odor permeating the house had nearly overcome him.

     Since the training, Gene has held onto a job as a part-time dishwasher.
(He had been fired in short order from three prior assisted work positions
for having temper tantrums.)  He is much more relaxed.  He has learned to
take the bus to work and takes walks by himself.

     Gene was one of the success stories among the group of people in the
experimental program together.  He was, incidentally, the only one who
could facilitate.  His hearing could be measured more precisely because
my husband was there to facilitate him.

     I would be happy to share information on the auditory training
program in Oregon.

Wendy Bousfield
LIBWBB@SUVM.BITNET
Bird Library
Syracuse University
Syracuse, NY  13244-2010
(office)  315-443-9520
Newsgroups: bit.listserv.autism
From: kasab@luther.che.wisc.edu (John J. Kasab) 
Subject: Facilitated Communication Question
Organization: University of Wisconsin - Madison
Date: 28 Sep 92 13:29:50 CDT
Originator: kasab@luther.che.wisc.edu

In recent months, I have seen some newspaper articles and heard (on this
newsgroup and elsewhere) about a novel technique called Facilitated
Communication which has been used with some success to communicate with
persons with cerebral palsy and autism (among others).

My understanding of the method of this technique is as follows:  There
are two people, the facilitator and the facilitatee [I apologize for this
awkward term, but I think it is clear].  The facilitator supports the
typing hand of the facilitatee over a keyboard (or a letter board) and
provides some resistance against the facilitatee's motions towards the
keyboard.  Then, when questions are asked to the facilitatee, the facilitatee 
presses towards a key, the facilitator provides support without somehow
steering the hand, and an answer is generated a letter at a time.  

I understand that this technique has been dramatic in its impact because
the facilitatees who respond well are suddenly able to communicate at a
much higher level than had been suspected.  Despite these encouraging
results, I have also heard that the pioneer of Facilitated Communication in
the United States (who applied the technique to autistics) refuses to have
independent studies verify the utility of this technique.  In simpler terms,
he seems to be refusing to have his work scientifically verified, which
means that he could be involved in a huge snow job.

Now it seems to me that the major flaw in the technique as described is
that it has not been shown that the facilitator does not steer or guide
the hand of the facilitatee.  Although I realize that the facilitatees
type relatively quickly in most cases, the facilitators could react on a
subconscious level to these questions and thus affect the answers.

Has there been a study that tests whether this "facilitator effect" is
actually the source of the perceived intelligence?  I mean, this is not all
that different from the old Ouija Board party game where "the spirits are
moving the pointer to the letters," which is, of course, a lot of bullshit.

It seems to me that it would not be difficult to prepare and conduct such
a test assuming that a suitable sample could be found.  You could either
prepare written questions show them or use headphones and speak them to
one or the other or both.  Also, it would be interesting to present
different questions to the pair and see which question the answers
address.  I think that such a simple study would go a long way in
demonstrating that autistics do internally function mentally much better
than they can normally show.

Thanks for your replies,
JK
-- 
-------------------------------------------------------------------------------
  John Kasab                             "I rarely speak in absolutes."
Arpanet: kasab@cae.wisc.edu              (alt: kasab@luther.che.wisc.edu)
      The NSF and UW--Madison don't speak for me, nor I for them.
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Date:         Sat, 3 Oct 1992 13:31:01 +1000
              <AUTISM@SJUVM.BITNET>
From:         LNCJB@CC.NEWCASTLE.EDU.AU
Subject:      Re: Making the first appoarch (Was Re: Poetic Gifts)

Judy,

I'm really pleased to see that you now consider yourself one of us. :-)

>Autism may explain a lot.  I wonder how many autistic
>shrinks there are?:-)

Not nearly enough! I used to know one other.... I used to work for him. He
employed me out of 50 other applicants, because I was the only who applied
who was the 'right' astrological sign, even though my qualifications weren't
up to scratch.:-)  Fortunately for me, while I was working for him, my ex-,
after driving me into a 'catatonic-like' state took me to him to have me
diagnosed 'mentally incompetent', my employer pronounced me 'the sanest person
he mad ever met' and stated that there was nothing wrong with me that getting
rid of my neurotic husband wouldn't fix. He was right, but it took me 5 years
to realise that I didn't have any other option.

>Abby, my niece, must really be my love child (by Elvis?)
>...nah, I saw my sister give birth to her.

You would be irrefutably 'high-class' autistic if you actually 'experienced'
the birth of your niece (shared your sister's labour pains). Have you had any
experiences like this?

Carolyn
Newsgroups: bit.listserv.autism
From: jbadner@world.std.com (JA Badner)
Subject: Re: Making the first appoarch (Was Re: Poetic Gifts)
Organization: The World @ Software Tool & Die
Date: Tue, 6 Oct 1992 02:52:07 GMT

I have another data point on empathy and female autistics.  My autistic
niece, Abby, always needs a bandaid when she is feeling bad (sad, in pain,
anxious, etc).  In the past year, she will offer a bandaid to anyone in
the family who is feeling bad.  When I saw her in May, I had a blister
on my heel and she took great delight in putting a bandaid on it.  
When I next saw her in August, she kept checking my heel to see if I
had a blister (it had healed by then) and needed a bandaid.

Judy
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Newsgroups: bit.listserv.autism
Date:         Wed, 30 Sep 1992 09:15:50 EDT
              <AUTISM@SJUVM.BITNET>
From:         Daniel Mont <D6M@CORNELLA.BITNET>
Subject:      Testing F/C

The discussion about testing F/C is getting hot and heavy...as it always
does, and I find myself torn in both directions.  One the one hand, if F/C's
usefulness is more widely accepted AND if we can figure out which type
of children benefit the most from which type of F/C approaches more children
can experience a higher quality of life.  OTOH, I understand the
trust and "guinea pig" issues, as well -- both their cogency and the
depth of emotions they invoke.

I can not presume to resolve this issue but there are two points I would like
to add.

(1) My son Alex *loves* being tested.  It is one of his favorite activities.
It is a structured activity that suits his interests -- both analytical,
structural, and also his desire for there to be a "right" answer.  And
he doesn't get upset if his answer is not right if the correct reasoning
is explained to him.  This means that there may be other autistic children
for whom testing is not traumatic, especially if trust and rapport can be
developed between researchers, facilitators, and children.

(2) Testing could be *offered* to children, parents, and facilitators
(as a trio).  Children, parents, and facilitators could have the power
to say *no*.  When I was an emergency rape crisis counselor there was
a big debate over whether men should offer assistance to women entering
the emergency room when female counselors were not available.  One
side of the debate said that the men should ask if they could be of help.
If the women said "NO" the men would simply honor that request, thus
maybe helping give the women survivors at least one iota of power
back in their lives.  Offering the testing to children gives *them*
the power.

Now I know exactly what you experimenters out there are thinking.
This would create a non-random sample, i.e. sample selection bias.

However there are statistical methods for dealing with this problem.
In econometrics there is the Heckman Selction Bias Corrected Regression,
within planning evaluation there is a technique developed by Bill Trochim,
there are several other semi-parametric and non-parametric methods for
attempting to correct for this bias that have been developed in a number
of disciplines.  Would random samples be better? Yes, *IF* we were only
concerned about the bias and efficiency of our estimates.  However, as many
contributors to this list can attest more eloquently than I there are other
considerations, as well.

Maybe if tests like these were run the results and the manner in which
the experiments were conducted could demonstrate the usefulness of
testing to the anti-testing people and the give the chance for the
experimenters to also demonstrate their ability to be sensitive and
understanding of the children's and parent's feelings regarding this
issue.
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Newsgroups: bit.listserv.autism
Date:         Fri, 2 Oct 1992 17:03:21 -0500
              <AUTISM@SJUVM.BITNET>
From:         James Bordner <jobg0542@UXA.CSO.UIUC.EDU>

Hi Diana,

> From what I know, Autism seems to make the individual very private.  Every-
> thing is kept inside.  I don't know if that is because they feel they can't
> express themselves, they don't want to for some reason, or they really want
> to and there body and mind tells them otherwise.

I came across the analogy between autism and blindness somewhere which
I think is a fairly good one.  Like blind people can't see, autistics
can't express themselves in the usual way.  I don't think I would phrase
it as their body or mind telling them not to though; perhaps as their body or
mind _not_ telling them how to express themselves.  It's not that they
feel they can't-- they _can't_.

Don't ask me why though, I'm still as perplexed about that as anyone :-}
Communication is pretty much instinct for most people-- they don't have to
think about how to communicate, just what they're communicating-- the how
part comes automatically.  One possible explanation for why autistics have
difficulty communicating is that the how part does _not_ come naturally--
they have to concentrate on both how and what, and it's difficult to
concentrate on two different things at once!!

--james
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Date:         Mon, 28 Sep 1992 22:34:17 +1000
              <AUTISM@SJUVM.BITNET>
From:         LNCJB@CC.NEWCASTLE.EDU.AU
Subject:      Re: Making the first appoarch (Was Re: Poetic Gifts)

Judy,

I suspect that many of the 'autistic tendencies' of female children have been
accounted for, in the past, by 'presumed shyness'. I was considered to be a
painfully shy child by relatives and family friends right up to the time I
left home at 16. When they subsequently met me, they couldn't get over 'how
much I had changed'. BTW all of them thought my parents were being negligent
to allow me to leave home at that age - my parents knew me better than that...
they knew there was no problem with my self-confidence or my ability to look
after myself and the only promise I had to make my father was not to get
involved in 'sex, religion or politics'. :-) These same people also regarded
my mother as a very shy woman.... not my perception of her at all, but I was
aware that she also had difficulty making social contact with people.

One thing I've noticed about the people on this list is that if you 'wind us
up' we have plenty to say.... but most of the time we only 'speak' when we
have something that we consider important to say. There isn't the amount of
'idle chatter' on this list that is found on many of the others. Has any one
else noticed this? I find this very typically autistic. So Judy, why did you
go away for so long? :-)

Carolyn
Newsgroups: bit.listserv.autism
From: jbadner@world.std.com (JA Badner)
Subject: More "coming out of the closet"
Organization: The World @ Software Tool & Die
Date: Tue, 6 Oct 1992 23:38:24 GMT

I just realized today that my niece and I share another trait and I wonder
if this is characteristic of autistics (female?).  We're both extraordinarily
sensitive to criticism.  When I get criticized, it is all I can do to not
believe that I'm a complete failure and will never succeed at anything
despite having much evidence to the contrary and even if the criticism
is relatively trivial.  I know this is an irrational response but that
doesn't keep me from going through it.  My niece used to react to
criticism by saying "make Abby go down the drain" and other equally
self-destructive things.  She doesn't say the self-destructive things
now (she's 6) but she is still very sensitive to criticism.

Judy
From: jmwobus@MAILBOX.SYR.EDU (John M. Wobus)
Newsgroups: bit.listserv.autism
Subject: Re: Facilitated Communication Question
Date: 2 Oct 92 21:10:13 GMT
              <AUTISM@SJUVM.BITNET>
Comments: Gated by NETNEWS@AUVM.AMERICAN.EDU
              30 Sep 92 14:36:45 +0900." <9209300441.AA28657@mailbox.syr.edu>

Carolyn writes:
>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).

Well I didn't mention the "whims of research scientists", only that
something which you can watch but cannot tell if its working be tested
with scientific scrutiny.  Same for autistic people as the rest of us.
If there is one thing worse than being a guinea pig, it is being
subjected to quackery that can't work.  Autistic people over the years
have been subjected to a lot of things that have fortunately been
debunked.

Ideas like scientific inventigation of autism scare people with a
comic-book view of science ("people who work in labs, doing weird
things"), but there is no law that says anyone--humanists
included--cannot take a scientific attitude and do science.  Mostly
what it takes is knowing the literature, being a skeptic about your own
ideas and views, and using a lot of common sense.  Testing your own
assumptions.  The result in the case of f/c would be a lot more people
who believe in it, and a lot more autistic people reaping the
benefits.

John Wobus
Syracuse univeristy
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Newsgroups: bit.listserv.autism
Date:         Wed, 30 Sep 1992 11:15:14 EDT
              <AUTISM@SJUVM.BITNET>
From:         Lisa S Lewis <LISAS@PUCC.BITNET>
Subject:      Re: Audiotory Training
              30 Sep 1992 10:12:58 EDT from
              <AXY01%ALBNYDH2.bitnet@UACSC2.ALBANY.EDU>

I would call the Georgiana Foundation for information on how this has
worked for lower functioning kids.  I have heard that it is more successful
with higher functioning children, but Georgie (the girl who was "cured"by it)
was very low functioning when she had her treatment in France.

The Foundation's number is 203-454-1221. They can also tell you if
anyone in your immediate area is doing AT.

We are considering this for our son, who is fairly high-functioning and
quite verbal.  He displays a lot of sound sensitivities.  We haven't been
able to schedule it yet for a time that won't interfere with school.

I do know one small child (I believe he is five) who was helped a lot. He
became much calmer and tactile defensiveness decreased greatly.  Prior to
training he was unable to walk on concrete...now he can.  He was also
incapable of touching sand, and the sound of the ocean made beach visits
impossible.  After completing AT, they spend a weekend at the beach and he
had a great time, playing in sand, not worrying about the roar of the ocean.
Another child I know had it in Montreal, prior to anyone doing AT here.
Her father maintains it didn't help, but her mother is convinced it was
instrumental in her daughter regaining her speech.

RE:scheduling...they don't want a child who is receiving treatment to be
in school (or at least learning anything NEW) or therapy. For that reason,
scheduling for us is difficult.  Waiting lists are long, and Sam won't have
a full two-week period without school until August (he has a full-day,
extended year program.)  So we're hoping to schedule it for that time.

Lisa
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Newsgroups: bit.listserv.autism
Date:         Tue, 29 Sep 1992 17:41:13 -0400
              <AUTISM@SJUVM.BITNET>
From:         "John M. Wobus" <jmwobus@MAILBOX.SYR.EDU>
Subject:      Re: Facilitated Communication Question
              29 Sep 92 11:17:29 +0900." <9209290120.AA02059@mailbox.syr.edu>

In message <9209290120.AA02059@mailbox.syr.edu> you write:
>>Has there been a study that tests whether this "facilitator effect" is
>>actually the source of the perceived intelligence?  I mean, this is not all
>>that different from the old Ouija Board party game where "the spirits are
>>moving the pointer to the letters," which is, of course, a lot of bullshit.
>
>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!

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

John Wobus
Syracuse University
From: apembert@VDOE386.VAK12ED.EDU (Anne Pemberton)
Newsgroups: bit.listserv.autism
Subject: Re: Making the first appoarch (Was Re: Poetic Gifts)
Date: 5 Oct 92 21:28:21 GMT
              <AUTISM@SJUVM.BITNET>
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X-Mailer: ELM [version 2.3.1 PL11]
              "LNCJB@cc.newcastle.edu.au" at Oct 6, 92 1:42 am

Carolyn,
    Just a thought --- are you sure that this is a quality of
autistic females, or is it a manifestation of the personality
of the individual/s involved??

    Anne
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Newsgroups: bit.listserv.autism
Date:         Tue, 29 Sep 1992 17:18:04 -0400
              <AUTISM@SJUVM.BITNET>
From:         "John M. Wobus" <jmwobus@MAILBOX.SYR.EDU>
Subject:      Re: Facilitated Communication Question
              28 Sep 92 13:29:50 CDT." <9209290303.AB03942@mailbox.syr.edu>

My understanding is that tests of some facilitator/facilitatee
combinations have conclusively shown that the facilitator is doing the
talking and that tests of other combinations have shown conclusively
that the facilitatee is doing the talking.  Both groups include
facilitators who swear up and down that they are not guiding the
facilitatee's hand .  The tests are not that hard to conceive--they
include things like having both facilitator and facilitatee wear
earphones and have them hear different questions on occasion.

A conclusion some have drawn is that such tests should be run on EVERY
facilitatee in order to determine whether communication is taking
place.  I know from experience that such an idea has not filtered down
to the point where the average facilitatee gets tested.  This is very
important these days because of the number of instances where a
facilitator/facilitatee combination has made accusations of parental
sexual abuse.  Not to denigrate the importance of the question of
whether a student's program is actually doing anything to help him/her
or not.

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.

John Wobus
Syracuse University
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