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Date:         Wed, 6 Jan 1993 08:38:00 EST
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Comments:     Resent-From: Bob Zenhausern <DRZ@SJUVM.BITNET>
Comments:     Originally-From: HUGGINS@MERLIN.NLU.EDU (Lynda W. Huggins)
From:         Bob Zenhausern <DRZ@SJUVM.BITNET>
Subject:      Please help

Lynda Huggins was having some problem with transmitting this message and
I am forwarding it for her.
wrong?

On Tue, 5-JAN-1993 10:53:27.53 - Lisa S Lewis writes:

Lynda, was the Oregon study the same one that was reported on the June
12 20/20 episode?

   Yes.  20/20 reported on (I believe) two participants in Dr.
   Steven Edelson's research study on Auditory Integration Training.
   This study was conducted over several months (August '91 - March '92)
   and included over two hundred participants.  People traveled from
   all over the U.S. (at their own expense) for a two week stay in
   Newberg, Oregon.

   My son participated with group 5, October 6-17, 1991.  There
   were 14 participants in our group, ranging in age from 4 to 17.
   Jon was 16 at the time and the most verbal participant they had
   had thus far.  Jon was VERY verbal, practically talked non-stop,
   especially when excited.  I observed a wide range of characteris-
   tics in the children in our group.  Some were non-verbal, others
   spoke only a few words.  Some were withdrawn, some more social.
   Jon was by far the most social.

Could you describe exactly what changes you have observed in Jon since he
took part in the training?

   The most significant change has been an overall calm in his demeanor.
   Jon's father and teacher both noted this after speaking with him by
   phone during our stay in Oregon.

   I decided to keep a diary of any changes noted in Jon's behaviors.
   Everyone in daily contact with Jon (parents, brothers, grandmother,
   teachers, etc) agreed to note and record our observations.  My log
   is quite long but I will list a few of our observations.

   Jon is not so anxious in his conversation.  He interrupts other's
   conversations less frequently.  Jon completes sentences for others.
   Before he did not seem to understand another's thoughts well enough
   to do that!  Previously, most of his conversation was echolalic and
   pertained to what he had just heard.  He began to comment on things
   said an hour earlier.

   Sounds that he previously did not like, are now often amusing to him.
   Jon did not like to be near our dog and hated for him to bark.  He
   now goes to the patio door and asks Spot to "speak"!  He used to
   cover his ears and say "turn it off" when his Choir teacher rewound
   a tape recorder used to record class practice.  After AIT, Jon
   thought the high pitched screech of the rewinding tape was hilarious.
   His singing in choir is now in correct volume and mostly on key.

   In late October Jon's teacher, Mrs. Knesel, reported "I gave Jon 2
   nickels rather than 2 quarters to buy a soda.  Jon said that was
   wrong so I asked him to select the correct coins.  He selected 2
   quarters.  He would not have noticed the difference before Oregon.
   He would have put in two of whatever I gave him."

   He is less distracted by noises outside his classroom now.  His
   incessant talking and questioning was greatly reduced.  He now gives
   unsolicited recitations of information in conversations.  His
   conversation contains more original thought.  He responds more
   appropriately and spontaneously.  He seems better able to convey
   his thoughts.

   Our middle son, Jason who is a year older than Jon, had a house
   guest at Christmas, a friend who had moved away the previous summer.
   His comment to Jason, "Jon has gotten smarter since I saw him last."

   Jon had a standard order for any restaurant - Burger King, McDonald's,
   etc.  He ALWAYS ordered the same thing.  He began to select new items
   from the menu.

   He wants us to "write it down", notes about things he will soon do,
   etc.  He constantly points to the TV screen and says "read it" to
   text on the screen.  He wants to write things himself and insists
   that we spell words for him.

   Jon's thought processes are becoming clearer and more complicated.
   He can answer more complicated questions correctly without my
   clarifying and restating the question.  He is less upset by unexpected
   events.  He handles disappointment better.  He seems to be developing
   a sense of humor.  I guess what I mean is that he has more under-
   standing of what is amusing.  He laughs more appropriately.

   At school he is better able to complete work sheets that require
   drawing lines from one picture to another.  He is better able to
   copy from the board to his paper.  He still has difficulty with
   double letters and tends to copy the letter only once.  He is more
   aware of the left to right progression of sentences.  He is better
   at finding "hidden pictures".

   There is less pronoun reversal.  He is using words that he did not
   use before.  Some of his comments:  "Let's make a decision now.  It
   must have been my imagination."  He says things that really catch
   our attention because of his phrasing, new vocabulary, and increased
   understanding of topics.

Please refresh me (and the list) as to Jon's age, level of functioning, school
etc. Did he have a lot of trouble with sound sensitivities?

   Jon is 17, very verbal, and I assume would be considered a high-
   functioning autistic (whatever that means).  He is currently in
   a junior high setting, main-streamed for art, choir, and P.E.  He
   has been in a self-contained setting since beginning school.  This
   I believe, has been his greatest loss, to be isolated from his
   "regular" peers!  Jon was classified as Mild/Moderate Retarded
   until age 12 when the school system reclassified him as autistic.
   I did not believe he was autistic (because I knew and understood
   so little about autism) but agreed with the label as I realized
   he would receive much better services.  He has received one-on-one
   instruction for the last five years.  It took me a year and a half
   of reading, research, and finally listening to a presentation by
   Dr. Ruth Sullivan to be convinced that he is indeed autistic.

   At the beginning of the 1991 school year, Jon's teacher asked if
   I had ever noticed that Jon heard things before I did?  I said
   "not particularly".  She had noticed that he heard planes, trains,
   etc. before she could, as they traveled in the community.  I began
   to review Jon's development and how sounds had affected him.  He
   would almost jump out of my arms as an infant in response to noise.
   He hated the vacuum, mixer, lawn mower, etc.  He was terrified of
   fireworks.  We finally had to quit Special Olympics because of his
   "terror" of the starting gun.  He has always hated bugs - perhaps
   because he can "hear" them!  Only recently have I come to understand
   his fear of balloons is really his fear of them popping.

What does his school think of this treatment?  Do they also document changes?
Is his school a data-based program, that would be able to come up with
quantifiable improvements in cognitive or other areas?

   The school system itself is not convienced of the value of AIT.
   Jon's teacher states "I have seen many subtle changes in Jon that I
   can only attribute to the auditory training."  Jon will have his
   3-year evaluation at the end of this school year.

Could you tell us about the differences in the BCG device?  All the places
in the east (that I know of) doing AIT are using the Berard device.

   The BCG device was developed by Bob Clark, an electrical engineer and
   the father of an autistic son.  He felt that he could improve upon
   the Berard model by utilizing advancements in the field of electrical
   engineering since the Berard device was developed.  Dr. Edelson's
   study was to compare the effects of the two types of equipment.

Our 4.5 year old is scheduled for AIT on a Berard type device in June. While
he does have a lot of sound sensitivities and thus we feel it would be worth-
while, we have some reservations.  For example, everyone (including Annabel
Stehli) acknowledges a "temporary" increase in aggressive behavior. But how
temporary?

   I did not observe any increase in aggressive behaviors in Jon either
   during AIT or since.  He had no noticeable "side effects", i.e., headache,
   upset stomach, etc.  I will say that he has become more assertive.

I read the Stehli book months ago, but my husband read it only recently and
he urged me to reread it (which I did.)  His point was that IF there was a
"miracle" it was performed at Bellevue.  Really, the book was a ringing
endorsement for intensive, data-based, one-on-one behavior modification therapy
techniques.

Georgie entered the Bellevue program as a non-verbal, completely unattached
four year old.  Within a month (I think) she spoke her first words.  And she
continued to improve dramatically.

   Georgie now works at the Center for the Study of Autism with Dr.
   Edelson.  I have talked with her on several occasions.  She can
   tell you the dramatic changes she experienced directly as a
   result of AIT.  "After auditory training, the rain did not sound
   like a machine gun."

   I do not believe that the Stehli's, Georgie, or Dr. Edelson are
   suggesting that AIT is a miracle "cure".  They would never suggest
   that behavior modification, structured educational programs, or
   the various therapies are not also needed.  AIT will not help
   everyone (or possibly anyone) to the extent it helped Georgie.
   She is that one in a million.  Dr. Edelson is trying to determine
   who it will help and to what extent.  Will it help only persons with
   sound sensitivities?  Is one age better than another?  Do girls
   benefit more?  Lots of questions that only time and research will
   answer.

   I went to Oregon hoping that if nothing else, AIT might increase Jon's
   attention span and better enable him to learn.  I would do it again,
   and in fact, Jon is scheduled to receive the Berard-type training next
   month.  There are currently eight local families contracting for AIT
   here. No miracles are promised.

   When we traveled to Oregon in 1991, Dr. Edelson was the only person
   in the U.S. offering Auditory Integration Training.  There are now
   over 120 trained practitioners.  The Stehli's bring Dr. Berard to
   this country several times each year to train people in the use of
   his equipment.  I have a current list of practitioners if anyone is
   interested in where AIT might be available near them.  I love the
   idea of bring the training to the kids where they live.  Persons
   with autism are so affected by changes in environment and routine.
   The best idea I have heard yet is that the Fox School District
   outside St. Louis, has purchased Dr. Berard's equipment and paid
   to have school personnel trained and will offer AIT through the
   school system!

   Dr. Edelson is establishing the Society for Auditory Integration
   Training (SAIT), dedicated to the enhancement of the quality of
   life for individuals with special needs through auditory integration
   training.  The purpose of SAIT is to establish policies, minimum
   training and equipment standards, and guidelines for Trainers, and
   to promote a professional image.  Objectives include:  promote
   professional and ethical standards for AIT; set procedural standards;
   promote networking and sharing of information; advise and evaluate
   research on the efficacy of AIT.

   Hope this answers some of your question.

   Lynda in Louisiana
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