| by Stephen
Shore
Note: This is adapted from an excerpt of a presentation
USING MUSIC TO WORK WITH AUTISTIC CHILDREN on
July 21, 1997 that I gave at the Allegro School
in Cedar Knolls, New Jersey, USA. Since I was
giving the speech, the text is in the third person.
- Stephen Shore
Childhood
The final example involves a boy born in the
early 1960s who seemed to develop normally until
the age of about 18 months. His parents were very
surprised find him turning over at only eight
days. He was able to say "mama" and
was developing verbal facility at a good clip.
Then something happened. The crib was the only
place where this child felt safe. This crib was
also used as a trampoline. For the next year and
a half, there was no speech, self-destructiveness,
spinning around in circles with his finger in
his ear, etc.
His physical development was extremely sophisticated
for his chronological age. Questions filled his
mother's mind. She would call to him as he twirled
in the backyard but there would be no response.
If she went over and touched this child, he would
grab her hand and go into the house for lunch.
He was brought to the family pediatrician who
said "He definitely not retarded; he may
be autistic."
At age two and a half, he was diagnosed as having
strong autistic tendencies by a team of psychologically
oriented professionals at a childrens' center
in the Boston area. The word "psychotic"
was also mentioned. The center was reluctant to
take on "such a sick boy" into their
program and recommended institutionalization or
foster care. The parents, believing that to be
a suggestion with which they could not live, adamantly
refused. The mother sarcastically said, "It
is enlightening to know that they knew of these
wonderful high-functioning psychologically oriented
homes." The center agreed to take this young
boy in a year hence. For all we know, this year
might have been too late under different circumstances.
This was the era of the single income family.
Father went to work and Mother stayed home to
do housework and take care of the kids. The older
brother and sister went to school and this boy
was home with his mother.
His mother took it upon herself to work with
this kid. She attempted to get this enigma of
a boy of hers to imitate her. No luck. She then
tried imitating this child's actions. Perhaps
he would let her into his world by doing this.
Then she would by able to draw him out of his
world into hers. Slowly she was admitted entrance
into his world. This approach was later used and
written about by Barry Kaufmann in his book, _SONRISE_.
The interesting thing is that his parents felt
that this was the key to unlock the door before
the Sonrise program existed.
Classical music played throughout the day as
the mother hummed, sang, conducted and moved to
the aural orchestra. There was much work to be
done. Going into the supermarket overstimulated
the child to the point of tears. There was just
too much sound, too many people and vendors offering
tasty but unwanted food. He would sit at the end
of the driveway smashing open small rocks with
a larger one and seemed to be fascinated by the
shiny, speckled bits of quartz on the inside.
This interest grew into a substantial rock collection...
which had to be lined up in perfect order. The
mother must have done something right because
at age four, when the child was admitted to the
Children's Center, he was toilet trained and after
a bought of echolalia, speech was well on it's
way. The Center found it hard to believe that
this was the same child they had seen one and
a half years earlier.
Other interests of great intensity continued
to visit upon the child throughout his public
school years and beyond.
Airplanes, Astronomy, Bicycles, Earthquakes, Medicine,
Chemistry, Mechanics, Electricity, Electronics,
Computers, Hardware, Tools, Psychology, Music,
Rocks, Geology, Geography, Locks, Cats, Dinosaurs,
Watches, Shiatsu, Yoga, Autism,
The child hated dogs, loved kittens and was terrified
of the bathtub. A dog, with its unpredictable
habits of barking and licking his face was too
much to tolerate. Messy food was intolerable.
The face and hands had to be wiped with a napkin
after every bite. A breakthrough occurred at age
five or six when the child was discovered to have
made a royal mess of himself eating BBQ chicken
wings followed by a huge piece of watermelon.
The mother never thought she'd be so happy to
see such a messy kid.
The child started public school kindergarten
a year late. Public school at the elementary level
was a disaster; both socially and academically.
The other students sensed a difference and made
life miserable for this child as is common for
public school situations at this age. His teachers
said that academics in math and reading were delayed.
The first grade teacher said he would never be
able to do math. Somehow, by adulthood, the child
had figured out enough about mathematics to teach
the subject at the college level.
The parents were taken aback by the second grade
teacher who said their child couldn't read. He
was reading the newspaper at home. The reading
comprehension assignments were a disaster. The
interests listed just earlier held much more interest
for the boy.
The Teenage Years
Things got better in junior high school and better
yet in high school as the child discovered the
music room and spent a considerable amount of
time there. He had finished about 10 years of
psychotherapy to exorcise the demons that created
the autism. The counseling didn't cure the autism
but did prove helpful for dealing with the number
that autism will do on a person's psyche. For
this reason only, I think therapy is good for
dealing with the secondary issues that may arise
from being autistic. However, the councilor needs
to be aware of the sensory and other issues related
to being on the autism spectrum -- and maybe THAT'S
why the child pulls away from his mother and NOT
because the mother had inflicted some sort of
psychological abuse.
When this boy entered college he felt he reached
paradise there was now more tolerance of different
people. The child-now turning into a man found
others that could appreciate him for what he was.
During the last years of high school and throughout
college he turned his interest in bicycles into
employment at a bicycle shop. He owned a small
bicycle shop that was used to help pay for school.
This person still rides his bicycle everyday.
His fascination with bicycles may have to do with
that they have many spinning parts.
Once entering college, he never wanted to leave
and still hasn't as he continues to study at one
college while teaching at another one. The structure
of the school day suits him well. At the undergraduate
level he obtained two bachelor's degrees simultaneously:
1. Music Education
2. Accounting & Information Systems
This person drove his advisors and several administrative
offices crazy as none of them could figure out
what the heck he was doing. This student was the
only one at his school to do get these two degrees
at the same time and graduated with the third
highest number of credits of anyone in the school.
224 credits to be exact.
Employment and Beyond
After leaving school he went to work at an accounting
firm, from which he was let go after three months.
Riding his bicycle to work and changing into his
suit at the office was too weird for them. The
place was riddled with nuerologicaly typical (NT)
people of a most virulent sort. This fellow then
worked at a large bank for the next year and a
quarter but was unhappy there. "I love the
study of business, accounting and taxation but
I can't stand working with the type of people
who choose these areas for their careers,"
he said.
He left the bank to teach in a business vocational
school, which was fine. During this time he returned
to school to work on a masters in music. This
person taught computers, math and business related
courses to support his music habit. After finishing
the masters and while working on the doctorate
he managed to get a college teaching job as a
full-time music instructor. Once again, paradise
which was lost, had been found. He is still very
happy at this place.
He is now married, finishing a doctoral degree
and as mentioned above, teaches music at the college
level.
Social situations and always doing what is appropriate
can still be issues at times. However, he is now
living a personally meaningful and productive
life.
That person is speaking before you right now.
------------------------------------------------------------------------
Family History
My paternal grandfather (died at age 76) was
prone to depression. He was a lawyer, businessman
and into real estate. My mother (b. 1938) is a
recovering agoraphobic, she went to business school
but never finished due to her dislike of the subject
and her increasing agoraphobia. She underwent
multiple years of psychotherapy until Dr. David
Sheehan in Boston discovered Nardil to correct
this disorder. Current research shows that Autistic
traits run in families and I can see many of those
traits in my mother. She says she saw them in
her father.
My brother (b. 1959) is mildly retarded. He spent
his public school days in special education rooms.
He cleans tables at a local Papa Ginos. His reading
is restricted to survival reading only. He can
copy text and type it out but he can not do simple
arithmetic or write under his own power. My brother
had a period of drop seizures during puberty but
which have now subsided. He does, however, have
a phenomenal memory and notices any small changes
in his environment. I wonder how much of his disorders
are caused by retardation and whether some of
them are caused by Autism.
My sister (b. 1957), father (b. 1932) and maternal
grandmother (b. 1908) are pretty normal NT type
of people.
Marriage Stuff
I have been married since 1990 to a Chinese woman
(b. 1959). We met in music school. She is an accomplished
musician. My wife doesn't understand what Autism
is about but still accepts me for who I am and
the many idiosyncracies that I have. I am fourth-generation
American and Jewish. This brings up the topic
of socialization. I have always gotten along better
with people who are not my own age or nationality.
Perhaps that is because I don't fit into what
the typical NT white American would expect. People
of different ages and cultures then mine may not
know all of subtleties of how I'm "supposed"
to act and thus accept me for who I am.
-----------------------------------------------------------------
**** Update: Currently the author has finished
writing Beyond the Wall: Personal Experiences
with Autism and Asperger Syndrome (2001, Autism
Asperger Publishing Company). Using the autobiographical
form, observations from working with people on
the autism spectrum and other realizations are
woven throughout the book. Stephen Shore is now
enrolled in a doctoral program in special education
with a concentration on helping people on the
autism spectrum reach their fullest potential.
|