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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mute and withdrawn from human contact, I would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.
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