The Journey of Autism
By Raun K. Kaufman
Does autism scare you? If so, you're not
alone. Who wouldn't be afraid, given the messages of fear,
hardship, and hopelessness that many parents and professionals
are bombarded with when it comes to this particular disorder?
After all, what are we told? First, we're told about the
staggering increase in autism spectrum disorders over the last
several years. We are informed that a condition that once
touched less than one in 10,000 children the United States today
affects more than 1 in 500 - in some areas, more than 1 in 250!
People with autism are described to us as anti-social,
disconnected people with no imagination who spend their days
engaged in bizarre repetitive behaviors or who, if verbal,
endlessly perseverate about inconsequential minutia while
remaining socially detached, unable to form relationships with
others. And, by far the most devastating, it is asserted that
children receiving such a diagnosis have an irreversible,
lifelong affliction, leaving many of us with little or no hope
for our children's future improvement or recovery. But does it
have to be this way? Or can we blaze a trail to lead ourselves
out of the fear and the darkness and into the arms of our
children?But does it have to be this way? Or can we
can blaze a trail to lead ourselves out of the fear and the
darkness and into the arms of our children? We do not have to
settle for these dim prognoses. How do I know? Well, I used to
have autism. Now I know the words "used to" may be throwing many
of you for a spin. We don't see those words on the same page as
autism, let alone in the same sentence. And yet, at the Autism
Treatment Center of America, where we teach a unique treatment
modality called The Son-Rise Program®, we see children defy
their prognoses on a regular basis. In fact, I was the very
first child to be helped with this program.
At 18 months, I was diagnosed as severely
autistic, with a tested I.Q. of less than 30. Completely mute
and withdrawn from human contact, I would spend my days
endlessly engaged in repetitive behaviors (often termed "stimming"
in the current lingo) such as spinning plates, rocking back and
forth, and flapping my hands in front of my face. I didn't want
to be touched, I never looked at other people, and I did not
give the slightest response to the calls and requests of the
people around me. I was, in every way, "in my own world."
My parents were told to expect no change
in my development (or non-development, as the case was). It was
explained that I would never speak, never have friends, never go
to school, never learn to communicate with others in any
meaningful way. My condition, it was said, was incurable,
unchangeable, and "hopeless." The prognosis was stark: I would
be autistic for the rest of my life. The professionals
recommended eventual institutionalization.
My parents searched diligently for a way
to help me progress, but were offered none. They sought a ray of
hope but were handed only dark predictions. And so they did
something truly amazing. With no support, without anyone to help
clear a path for them, they blazed a trail of their own. Marking
a complete departure from traditional methods of "treatment," my
parents designed and implemented an innovative and
groundbreaking program that was both home-based and
child-centered. And, thus, The Son-Rise Program was born.
After working with me for over three
years, my parents achieved what the experts had deemed
"impossible." Their Son-Rise Program enabled me to recover
completely from my autism without any trace whatsoever of my
former condition. I graduated with honors from high school, went
on to earn a degree in Biomedical Ethics from an Ivy League
university (Brown University), and then directed an educational
center for school-aged children. I now lecture internationally
at conferences, symposia, and universities worldwide, as well as
being an author, teacher, and the Director of Global Outreach
for The Son-Rise Program at the Autism Treatment Center of
America.
Although, unfortunately, so many children
are still, at an early age, being given the life sentence that
was once handed down to me, parents today do not have to
acquiesce to such a verdict. After my recovery, my father, Barry
Neil Kaufman, wrote a book relating our story in detail. The
book, entitled Son-Rise: The Miracle Continues, was later
recounted in an NBC television movie. In the avalanche of press
and attention that followed the publication of the book and
subsequent airing of the television movie, my parents were
flooded with requests for help.
Therefore, in 1983, they founded what is
now known as the Autism Treatment Center of America (a division
of The Option Institute, a non-profit, charitable organization),
which is dedicated to helping parents and professionals caring
for children with autism, autism spectrum disorders, PDD, and
other related developmental challenges. At our center, located
in Sheffield, Massachusetts, USA, we teach a system of treatment
and education designed to help families and caregivers enable
their children to dramatically improve in all areas of learning,
development, communication, and skill acquisition. We have
worked with thousands of people from across the globe, and
achieved results that have changed the face of autism and other
developmental disorders worldwide.
Currently, we offer several types of
programs, including an introductory program which provides
parents and professionals with all of the tools they need to
design, implement, and maintain a child-centered Son-Rise
Program. This week-long program, called The Son-Rise Program
Start-Up, teaches - through slides, videos, lectures,
interactive activities, and question-and-answer sessions - the
educational techniques, strategies, and principles of The
Son-Rise Program so that people can understand their children
with autism, PDD, etc., and thereby use that understanding to
facilitate the kind of learning and growth in their children
that they may have been told was simply not possible.
At the Start-Up, we teach everything from
facilitating interaction and getting eye contact to developing
speech and language and dealing with tantrums and repetitive "stimming"
behaviors. We also address in detail subjects such as creating a
special work/playroom for optimal learning and recruiting and
training a team of volunteers. Additionally, we provide
attitudinal training so that parents and professionals can
maximize their effectiveness in each and every moment spend with
their children. Participants often leave at the end of the
program not only with concrete tools and techniques, but also
with a permanent shift in perspective - from pessimism to
optimism, from despair to hope.
We offer this program several times a year
on our campus in the United States. Of course, if you have
questions, you can call us at (413)-229-2100 or you can find us
on the web at www.son-rise.org.
The foundation of The Son-Rise Program
rests upon this idea: the children show us the way in, and then
we show them the way out. This means that, rather than forcing
children to conform to a world that they don't understand, we
begin by joining them in their own world first - before asking
them to join us in our world. In this way, we establish a mutual
connection and relationship - the platform for all education and
growth. Keep in mind that interaction is the #1 challenge for
this group of children as well as the deficit most often cited
by parents as to where they would like to see their child
progress. Our primary focus, therefore, centers around helping
these children to interact with, connect with, and form
relationships with others. Furthermore, we want these children
to want interaction, as well as to act spontaneously rather than
by rote training. The key is to have these children "on our
side" and interested in what we are trying to convey to them.
Then, we can teach our children everything we want them to learn
with exponentially greater success, speed, and ease.
We find that a non-judgmental and
optimistic attitude is crucial to effective implementation of
this principle. Therefore, we never label our children's
repetitive and ritualistic behaviors as inappropriate, wrong, or
bad. In fact, we do not judge any of our children's challenges -
even if they don't change. At the same time, we look for the
possibilities, not the deficiencies, in the children we work
with. We do not put limits on the future of any child. Thus, we
open the door for limitless growth and progress.
One specific technique derived from this
principle is joining. This means that when a child is doing a
particular repetitive, exclusive behavior (i.e. stacking blocks,
flapping hands, etc.), we do not try to stop the child from
doing this. On the contrary, we do this activity with him! When
people saw my parents joining me, they attempted to discourage
my parents from doing this. "You're just reinforcing his
repetitive behaviors. He'll only do it more," they said. Luckily
for me, my parents didn't listen to these naysayers (who, of
course, had never tried the technique they were disparaging).
What we have seen time and time again with thousands of children
with autism spectrum disorders is that, as a result of joining,
children do their repetitive behaviors less, not more. Moreover,
we find that children consistently look at and interact more
with people when they are sincerely joined in their repetitive
activities. We are teaching these children the very skill they
lack: how to create relationships by building on common
interests.
A second technique is to facilitate skill
acquisition by capitalizing on a child's own motivation. This
means that we use each child's own motivation as a teaching
tool. The concept upon which this principle is built is the
following: learning is the single largest factor for growth.
This concept is well understood, seen throughout every area of
learning, and is not disputed. We know that children and adults,
regardless of ability level, learn more and learn it faster when
they are motivated by and interested in what they are learning.
Yet, we seldom see this principle utilized, especially when it
comes to children with special needs. Often, the mode of
learning and the children's interests are not matched. In the
case of children with autism spectrum disorders, traditional
learning modalities will rarely be motivating. Therefore, we
must customize the presentation of curriculum to match the
child's highest areas of motivation. If we match our goals to
each child's area of motivation, the result is a highly
effective symbiotic marriage between skill acquisition (social
interaction, toilet-training, language development, etc.) and a
particular child's natural areas of interest. This way, we use
the learning skills and interests our child already has instead
of trying to "run against the wind" by teaching in a way that
doesn't work for our child. Thus, learning is exponentially
increased - with a unique and startling benefit: we have our
child's willing cooperation.
I want to conclude by returning to the
issue of fear and hope. Everything discussed above is predicated
on the idea that a non-judgmental, non-fearful, hopeful attitude
is absolutely critical to the effective rapport-building,
socialization, and education of any child (or adult) on the
autistic spectrum. Attitude is not apart from the techniques; it
is a part of the techniques - arguably the most important part.
Fundamentally, we at the Autism Treatment Center of America see
our children as a blessing, not a curse. And yet, so many others
are surrounded by fear-promoters using terms like "lifelong
condition," "tragedy," "irreversible," "institutionalization,"
and, of course, "false hope." Who decided that a life sentence
was better than an open door and an outstretched hand? These
terms, and the ideas behind them, will not get our children
anywhere. (They won't get us anywhere, either.) If we really
want to help our children, let us dare to promote hope instead
of fear, acceptance instead of judgment, optimism instead of
dire predictions. Then our children can truly touch the stars,
because they will be standing on our shoulders.
(submitted by Stacey Groder)
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